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CANNABIS AND PEDIATRICS: WHAT ABOUT THE KIDS?
By: Stacey Linn (Mother of Jack Splitt)
By: Bonni S. Goldstein, MD
A Nurses Perspective: Cannabis Pediatric Refugees and the Reality in Colorado Jaxs' Update (Dravet’s & Prevention) Nurses Responsibilities and Roles with Cannabis Patients
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(GLWRU·V /HWWHU Now that there are legal Recreational states for cannabis adult use (+ 21 years) adults are making their way to Recreational dispensaries and able to purchase cannabis, just like alcohol, with a proper state ID. This is good news as patients and their families who are sick can now immediately obtain products without the long process of obtaining a state medical marijuana card; speeding their recovery and bringing balance to their bodies. However, there is one demographic that is excluded that legislatures have forgotten, The Kids. This issue asks “What About the Kids?” Cannabis Nurses Magazine is here to inform you about the kids. As controversial this topic is, it is necessary to discuss. Our children are our future and deserve the same benefits and rights as any human being on this planet. We know that cannabis aids in bringing balance within our bodies and is the key to our future health and wellness. Now it is time to learn why it is important to include the Kids. We first discuss Using Cannabis Medicine to Treat Children: One Pediatrician’s Experience with Dr. Bonni Goldstein, an expert in cannabis therapeutics with children. She provides personal experience and case studies of over a decade of treating successfully with cannabis and how cannabis has benefited her pediatric population. With the use of cannabis, she has broken the barriers to many childhood illnesses, and these kids are thriving. We then took on the challenge of seeking out kids from across the country who have utilized cannabis in their treatment plans. In this issue, we cover the stories of 8 kids: Jaxs, Jack, Mykayla, Trey, Coltyn, Sophie, Logan, and Maddie. These children and their parents have risked their lives in order to incorporate cannabis into their children’s treatment plans. These families are eight of thousands of patients who made massive sacrifices to help their desperately ill children, some by moving to Colorado with hope about cannabis in their hearts. The movement was so profound, these families and patients were given the title “Cannabis Refugees.” Today they wish to share their personal stories, some tragic, and some life-changing in hopes of providing future parents options besides traditional western medicine practices and pharmaceuticals. Their children have extended their life-cycles, some longer than what doctors had predicted, and they owe it all to a simple plant called cannabis. Our Main Cover Nurse, Jennie Stormes, RN, BSN, MSN Student, is known for becoming a Registered Nurse to care for her son of Dravet’s syndrome, and through her journey discovered the many benefits of this plant. Her recent Master’s thesis formulated the course work of Cannabis Education for Nurses (5.33CEU), which will be presented at the Cannabis Nurses Network Conference 2017 in Las Vegas, NV. She outlines Nurses Responsibilities and Roles with Cannabis Patients and how to include cannabis in The Nursing Process. Through education, we believe the stigmas will dissolve and cannabis will be normalized and incorporated into all patient care plans as an offered first line of treatment plan for all. Lastly, we bring you an article on Cannabis and Pregnancy: Maternal child health implications during a period of drug policy liberalization. It covers the controversial topics of pregnant mothers who consume cannabis and how Providers must recognize that even in environments where cannabis is legal, pregnant women may end up involved with child welfare. In states where substance use is considered child abuse this may be especially catastrophic. Above all, care for pregnant women who use cannabis should be non-punitive and grounded in respect for patient autonomy. One day, the laws will catch up to the science behind the plant. Until then, we need to provide autonomy and education in order to protect the children from being removed from the family nucleus. All of these children, and so so many more rely on cannabinoid therapeutics to obtain and maintain health and help them find relief from the symptoms associated with these debilitating conditions that have stricken their young lives. Without cannabis, these children are unable to attend school and face the harmful side-effects of pharmaceuticals. These are our kids, they are the children we work with, the ill ones… who deserve the same opportunity as all humans. Yes, it is important to include the Kids.
We must Grow. Julie Monteiro, RN, BSK “$VN 1XUVH -XKO]LH” Editor@CannabisNursesMagazine
“Cannabis does not ‘cure’ any disease states, it keeps it abreast and once you choose to incorporate cannabis into your treatment plan it becomes a life-style change; you will consume cannabis the rest of your life.” ~ Nurse Juhlzie Monteiro
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We are currently accepting articles to be considered for publication. For more information on writing for &DQQDELV 1XUVHV 0DJD]LQH, check out our writerâ&#x20AC;&#x2122;s guidelines at: cannabisnursesmagazine.com/writers-guidelines or submit your article to: editor@cannabisnursesmagazine.com : $QQ 5G 6XLWH 1 /DV 9HJDV 19 (GLWRU#FDQQDELVQXUVHVPDJD]LQH FRP 2QOLQH DW FDQQDELVQXUVHVPDJD]LQH FRP
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Contributors Bio: Janna Champagne, RN, BSN Janna Champagne, RN, BSN is a Licensed Registered Nurse in Oregon focused on holistic treatments, using natural alternatives to pharmaceuticals including cannabis therapy and nutrigenomics (genetically individualized interventions). "Nurse Janna” has significant experience using natural interventions to improve symptoms of Autism, chronic Lyme, autoimmune, chronic pain, cancer, and other health conditions. Through her extensive research of underlying causation models in chronic illness, Nurse Janna has created a system to holistically re-balance the synergy between systems to promote comprehensive healing of many disease states.
Bio: Jennie Stormes, RN, BSN, MSN Student Jennie Stormes, RN, lives in the state of Colorado, and formerly in both New Jersey and Pennsylvania, is a member of the American Cannabis Nurses Association, a board member of American Medical Refugees as Vice Chair, Colorado Springs Chair for CannaMoms, and a parent member of the Special Education Advisory Committee for Colorado School District 49 (Falcon). In 1999 Jennie’s son began experiencing intractable seizures related to Dravet Syndrome without much relief from traditional pharmaceuticals with 62 failedpharmaceutical combinations, 2 brain surgeries, VNS implant, and special diets. In 2012, she began a CBD/THC cannabis regimen with great success. She has used and seen the benefits of full spectrum cannabinoid sciences in treating many forms of epilepsy, cancer, PTSD and other medical and mental disorders effectively, especially when guidance and dosing information is available. She is also very politically active, testifying in both the assembly and senate committees in New Jersey, as well as lobbying with many other legislators in numerous states and has sat on medical and professional panels across the nation. Her mission is to make changes with cannabis as a legal treatment option. Driven by the amazing results she witnessed with her son, she is committed to remain active within the community to make changes by attending rallies, events, educating medical professionals and layperson’s whenever possible. She is currently spearheading the efforts in Colorado’s D49 school district to allow cannabis medication / administration on school grounds.
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Bio: Lisa Buchanan RN, OCN Lisa Buchanan RN, OCN has been a licensed as a Registered Nurse in Washington since 1992 and has been involved in cannabis patient advocacy for the last 16 years. She holds certificates of completion for both the Core Curriculum for Cannabis Nursing and the Advanced Curriculum for Cannabis Nursing. She is a member of the Oncology Nurses Society and the American Cannabis Nurses Association. Lisa founded Paisley Nursing Group, LLC in 2015 which provides evidence-based education and consultation to patients, the public, and governmental agencies. Lisa is participating as a panelist at Seattle Hempfest, August 19th-21st, 2016 and is on the Cannabis Nurses Magazine Advisory Board.
2016 Educational Achievement Award HeHeather Manus RN Cannabis Nurses Magazine
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06: A Nurses Perspective: Cannabis Pediatric Refugees and the Reality in Colorado By: Jennie Stormes, RN, BSN, MSN Student 10: Madeline Holt’s Story is one of Hope, Love, and Community By: Lisa Buchanan, RN (State of Washington)
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14: “Jaxs” Update (Dravet’s & Prevention) By: Jennie Stormes, RN, BSN, MSN Student (State of Colorado) 16: Colorado’s Medical Marijuana Program and Children By: Stacey Linn (Mother of Jack Splitt) 22: Using Cannabis Medicine to Treat Children: One Pediatrician’s Experience By: Bonni S. Goldstein, MD 26: What to look for when choosing Cannabis Pediatric Care By: Julie Monteiro, RN, BSK 28: The Fall, The Rise & The Research: A Momcologist’s Journey By: Tracy Ryan (Mother of Sophie) (State of California) 31: Autism and Cannabis: One Mom's Journey By: Brandy Williams (Mother of Logan) (State of Arizona) 34: Intro to Cannabis for Autism By: Nurse Janna, RN, BSN, Holistic Nurse & Warrior ASD Mama 36: Nurses Responsibilities - And - Roles with Cannabis Patients By: Jennie Stormes, RN, BSN, MSN Student 40: TBI and Cannabis: A Teenager’s Perspective By: Trey Brown (now 17 years old) (State of Minnesota) 44: Cooking with Herb: Summer Days at the Beach www.cookingwithherb.com 48: Cannabis and Crohn's Disease By: Wendy Turner (Mother of Coltyn Turner) (State of Colorado) 52: Brave Mykayla By: Erin Purchase (Mother of Mykayla) (State of Oregon) 55: Cannabis and Pregnancy: Maternal child health implications during a period of drug policy liberalization By: Katrina Mark, MD and MishkaTerplan, MD 61: Resources 62: Recommended Books 63: Nursing Conferences
A Nurses Perspective: Cannabis Pediatric Refugees and the Reality in Colorado By: Jennie Stormes, RN, BSN, MSN Student
You have a disabled child? A sickly child with cancer or Crohnâ&#x20AC;&#x2122;s? A child with autism or seizures? Something that cannabis is known to treat, then the advice most parents receive from the general community is â&#x20AC;&#x153;Go to Colorado, they have marijuana and it will cure your kid.â&#x20AC;? Not many are willing to stay and help fight for change within those states for many reasons. If they do stay for a bit to change the laws, the parent and the child become targets of the state and child protective services. For many of these kids, they do not have the time to wait for changes within their own state. Then there is the reality of moving to another state. It is an emotional situation with many decisions and implications. Moving is not easy for anyone, especially someone who is disabled. The cost can be $10,000 or more for a family, for a cross-county move. The services and medical supplies, the support system, and education services to be re-established. The cost of living in Colorado is not cheap and housing can be scarce in the more populated areas, which are closest to the medical care, educational, and social services. Jobs are available, but not for disabled or those who cannot pass a mandatory drug test, which includes the very medication needed to address the illness and symptoms they are trying to relieve.
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Cannabis is recreationally available for those over 21. For the medical program, a minor (under 18) requires a recommendation of two physicians with qualifying conditions. Adults only require one physician to recommend cannabis as a treatment. In Colorado, the qualifying conditions are limited with only selected disorders: cancer, glaucoma, HIV/AIDS, cachexia, persistent muscle spasms, seizures, severe pain, severe nausea, and just signed into law, PTSD (CDPHE, n.d.; Wallace, 2017). Children with autism, without another diagnosis or qualifying condition, may not be eligible under Colorado laws for cannabis use. This is the situation for many children who suffer from a disorder which cannabis is known to help, but do not have a qualifying condition in the state, they are excluded from the medical marijuana program. These parents are forced to administer secretly and are afforded no protection as a child who is allowed to possess a recommended physician approval and card from the state. As an adult, they would simply access the much needed cannabis through the recreational market, even though their use is medical. This will incur higher taxes and higher costs with less access to all forms of medical products afforded the medical patient. Additionally, they have different limits on amounts to purchase and carry than a medical patient in the same state. Establishing residency, medical care, finding a medical waiver (if eligible) and educational services in a safe neighborhood is stressful. New state residency comes with new rules, new taxes, and new realities. In Colorado, there is also the altitude, which can impact the existing health condition, especially those with breathing issues and oxygen needs. ome of the new realities are, not everyone in Colorado is accepting of cannabis as a medication. If you call the doctor to establish care, they do not take cannabis patients or Medicaid patients. Although there is an established
medical marijuana program in Colorado, the hospitals are not accepting of the use of cannabis to treat the qualifying conditions. If you are currently taking any narcotic or prescription medications, the potentially new doctor will not see you or refill those prescriptions. If you present to the emergency room or need an in-patient stay, there are policies and procedures which may oppose your chosen treatment plan. In Colorado schools are legally compelled by state law to allow a parent or caregiver to come onto a “Drug Free School Zone” and administer cannabis medications to their child, in honor of Jack Splitt, son of Stacey Linn (Colorado Legislature, 2016). Not all schools are compliant with the law and still refuse to allow a parent or caregiver on school grounds to administer the cannabis based medication. Equal access to children needing cannabis based medicine in public schools can still be a fight with unneded stress and battles to follow the existing laws. For some school aged children, this is only mdication that helps control their symptoms and allow them to attend school. The school nurse or other staff cannot and will not give the cannabis based medication: legally they cannot hold, store, or administer a cannabis based medication during the school day. "Jack’s Law", signed by Governor Hickenlooper in June 2016, guaranteed access to cannabis based medication to limit the intrusion of educational minutes to those children who need cannabis medication to control their symptoms (CBS4, 2016). This means a parent must take time to come to school, check in, take the cannabis based medication to the nurse office (or designated area), administer the medication and leave the campus with the cannabis. But wait, this is Colorado? The Children’s Hospital has studies right? That is the illusion of cannabis in Colorado. It appears to be accepted and for some it is, but not for all, especially those needing THC, not just CBD. Please understand, CBD is a medication and works well for many, especially children, but not everyone. As the children get older, experience puberty, and grow, their cannabis needs change and they outgrow their dose or cannabinoid mixture. Many children with infantile spasms need CBN, THCa or THC, not CBD. The CBD will and has made the seizures and spasms worse when there are spasms involved, not just seizures. It is almost like the CBD is a neuro-irritant in some cases or disorders. The THC actually has allowed many children become free from the spasms, dystonia, and even the relentless seizures. CBD is not the only medicine in the cannabis plant able to help children, there are many other cannabinoids to utilize. For many families, the reception at Denver Children’s Hospital in Aurora has been chilly and unsupportive concerning cannabis. During one emergency room visit, my son was labeled as an “illicit drug user” for being administered THC to address the severe dystonia and other juvenile parkinsonism symptoms being observed. The treatment plans, testing, and plan of care was limited with services not available for many
months, sometimes over 6 month wait, and no or limited assistance with traditional western medical options to support all the significant changes in abilities and ongoing changing medical needs. I personally experienced and hear similar stories with the neurological doctors in Colorado, but especially at Children’s Hospital. While some individual physicians are cannabis friendly, the federal laws may not allow them to be. Those individual physicians that are against cannabis are quick to condemn and judge anyone choosing to use cannabis under complete protection of federal prohibition. The children who are soon to age out are at an unfair advantage with aging out into adult neurology. Although your child can remain until age 21 or after if agreed upon to be in the best interest of the patient, the neurology department at Children's Hospital is quick to terminate services quickly or just be so slow in responding that a medical crisis is created. Many parents have reported to me that the neurologist or epileptologist will look at the medical record and if they see cannabis listed that the treatment plan changes and all the issues are blamed on the cannabis. The plan of care becomes limited with few options and little support, until the cannabis is stopped. From my personal experience, my son (Dravet’s) was throwing up non-stop, to the point that he was declared a failure to thrive and lost significant weight to 102 lbs at 5’5” tall. Cannabinoid Hyperemesis Syndrome was the reason, the diagnosis, and the suspected cause was “Marijuana Use”. If I would just stop the cannabis, he would do better. In defense of the doctor, research has not been allowed for over 80 years, 8 decades, so they have a lot to learn. However, more effort needs to be made to understand cannabis use benefits and cannabis use side effects. Hyperemesis Syndrome is real, but very rare. While on cannabis I made some dietary changes for my son. Guess what happened when I stopped using the formula prescribed by the doctors and paid for by the Medicaid insurance? Yep, he stopped throwing up. I began making his formula by blending real foods and feeding him in the G-Tube. The cannabis use continued, the formula was discontinued, he was fed real food, and he stopped throwing up. The emesis had nothing to do with the cannabis, it was the pea-protein contained in the formula. Until the physician has permission to understand, research, and incorporate cannabis into treatment plans, they will not understand cannabis as a medication. They will continue to take the easy path with blaming the cannabis for all medical issues and dismissing the patient, even if it is not true. But, you can see where the use of cannabis-based medications can cloud the picture and distort finding out the cause of pain, discomfort, disease, and symptom relief. Do not be tricked by the media or others who claim cannabis is being studied at Colorado Children’s Hospital. It is almost like it is a game of smoke and mirrors and staying just on this side of legal. There are currently three cannabis related studies, with some funding from the state of Colorado’s marijuana tax revenue to understand the use of cannabis in children (Denver Children's Hospital, 2016). However, if you read carefully and understand the studies, they are observational, opinions, and some blood work to understand labs and levels when using cannabis. If your child is already taking cannabis, they may not be eligible for the study. The recruiting for the study is also skewed to present misinformation as it excludes children already July/August 2017 07
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on cannabis and is a perfect portal for parents and caregivers who failed cannabis because they did not understand, were afraid of the treatment, or were lost in a world where the physician cannot tell them what to do or how to proceed, because legally they cannot do so. It is easier to be a pharma-kid than a canna-kid in the world of state rights versus the federal prohibition. What is the status of cannabis use in hospitals in Colorado? That all depends on the hospital, their policies, and who is enforcing the rules. Denver Children’s Hospital has a policy that has to be signed by a parent/caregiver assuming all responsibility and liability in administering the cannabis product while in-patient. They are doing observational studies (Denver Children's Hospital, 2016). Although they are friendlier with CBD products, they do not prohibit THC and other useful cannabinoids. As another example, in Colorado Springs, Memorial Hospital has a policy that will allow only epilepsy patients using CBD to use cannabis products as in patient. Each hospital is different and has their own policies which can change with little to no notice. Is Colorado a great place? Yes! As a parent I can be paid to be my child’s caregiver, even under the age of 18. This allows me the ability to tend to his medical needs, ongoing care, and to go to the school to administer his cannabis based medication when needed. We can grow our own medicine with home grows allowed. There is still judgements and stigmas, however, there are many supportive communities within the state to help learn about cannabis and thrive here. There are adjustments to be made, but realities to know before making the move to Colorado. It is a great place with access to a safe medication that someday will be mainstream and accepted. Today, cannabis is available and it is what each person makes of it for their own health and healing. Cannabis is a unique medication that has healed many, offered comfort to others, and created strange friends in the fight to educate others about its many uses and applications.
References CBS4. (2016). ‘Jack’s Law’: Medical Marijuana In Schools Bill Signed By Governor. Retrieved from Denver Post: http:// denver.cbslocal.com/2016/06/07/jacks-law-medical-marijuana-inschools-bill-signed-by-governor/ CDPHE. (n.d.). Debilitating conditions for medical marijuana use . Retrieved from Colorado Department of Heath and Environment: https://www.colorado.gov/pacific/sites/default/files/MMR% 20Qualifying%20Medical%20Conditions.pdf Colorado Legislature. (2016). House Bill 16-1373. Retrieved from Colorado House Bill: https://leg.colorado.gov/sites/default/files/ documents/2016a/bills/2016A_1373_signed.pdf Denver Children's Hospital. (2016). Research About Medical Marijuana. Retrieved from Children's Hospital of Colorado: https:// www.childrenscolorado.org/pediatric-innovation/research/marijuanaresearch/ Wallace, A. (2017). After years of lobbying by veterans, Colorado adds PTSD as medical marijuana condition. Retrieved from The Cannabist: http://www.thecannabist.co/2017/06/06/colorado-ptsdmedical-marijuana-veterans/80819/
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Madeline Holt’s story is one of hope, love, and community.
“I am doing what I have to do. Would you just give up if your kid was born with a terminal illness? You can’t be okay with that.” ~ Meagan Holt (Mother of Maddie)
By: Lisa Buchanan, RN Washington State Madeline Holt’s story is one of hope, love, and community. Maddie was born in November of 2012 at 28 weeks gestation. She weighed 2lbs 3 ounces at birth and spent the first 3 months of her life in the NICU. Her care team was proud of her continued improvement and development, congratulating her parents on their miracle baby. Maddie, now weighing 5 pounds, was discharged from the hospital with formula, a prescription for omeprazole to treat her gastric reflux, and hope that despite her premature birth and mild hearing loss, she would continue to progress and thrive with the love of her parents, Meagan and Brandon Holt. Things weren’t so easy for Maddie and her family after her discharge from the hospital. As the Holts began adjusting to their life at home with Maddie they noticed that her hearing loss was more severe than was initially thought. Maddie didn’t respond with a startle stimulus when a door slammed or when their small dog barked near her. They also noticed that she didn’t visually track items in the middle of her visual field. Maddie was bottle fed and still needed to eat every few hours. Her suckling rhythm was unique, and not very efficient. Her mother had to finesse the way that she bottle fed Maddie, attempting to get enough nutrition into her. When Maddie started projectile vomiting after small feeds, her family and care team decided that she would have a gastric feeding tube placed to ensure adequate intake of nutrition and fluids. During these first few months at home, it seemed like a new symptom and/or diagnosis happened every couple of weeks, along with new consultations and many follow up appointments.
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Maddie receives her care at Seattle Children’s Hospital. One of her care teams is the Craniofacial team. The team observed that Maddie had some key facial features that were similar to her fathers. In addition, one of the fontanels in her skull was still 6 inches across, a huge open head space. This led to a consultation with the Biochemical Genetics team during the summer of 2013. Biochemical genetics involves diagnosing and treating metabolic diseases. Blood was drawn from Maddie and sent it off to Johns Hopkins Hospital for DNA sequencing and evaluation. The results came back on October 30, 2013, 2 days before Maddie’s first birthday. Maddie has Zellweger Syndrome, a terminal genetic disease that destroys the white matter of the brain. It is the most severe form of a group of four related diseases called Peroxisome Biogenesis Disorders (PBD). Peroxisomes are cell structures that break down toxic substances and synthesize lipids (fatty acids. oils, and waxes) that are necessary for cell function. Peroxisomes are required for normal brain development and function and the formation of myelin, the whitish substance that coats nerve fibers. They are also required for normal eye, liver, kidney, and bone functions. Zellweger Spectrum Disorders result from dysfunctional lipid metabolism, including the overaccumulation of very long-chain fatty acids and phytanic acid, and defects of bile acids and plasmalogens--specialized lipids found in cell membranes and myelin sheaths of nerve fibers. Symptoms of these disorders include an enlarged liver; characteristic facial features such
as a high forehead, underdeveloped eyebrow ridges, and wide-set eyes; and neurological abnormalities such as cognitive impairment and seizures. Infants with Zellweger Syndrome also lack muscle tone, sometimes to the point of being unable to move, and may not be able to suck or swallow. Some babies will be born with glaucoma, retinal degeneration, and impaired hearing. Jaundice and gastrointestinal bleeding also may occur.1 Zellweger Syndrome is caused by a mutation in any one of 12 genes and is inherited in an autosomal recessive manner, which means both parents carry copies of the mutated gene.
Maddie had her first grand mal seizure in January of 2015. Prior to this Maddie could sit, roll on a flat surface, knew 100 signs that she could communicate with, and her only medical interventions were a feeding tube and omeprazole for gastric reflux. Daily seizures changed everything. Maddie’s team tried 26 different pharmaceutical medications trying to control her seizure activity and to keep her comfortable. Her personality and interaction with others was severely blunted by her medications, their side effects, and ongoing grand mal seizure activity. More medications equaled less Maddie. She was oxygen dependent, very sensitive to narcotics, and required CPR numerous times at home and in the hospital. April of 2015 was a difficult month for the Holts and their care team at Children’s Hospital. Brandon and Meagan were told that the medical team was out of options, having nothing left for treating Maddie’s disease and that it was time to make end of life plans, due to her medical fragility and impending death from seizures. Maddie was enrolled in Hospice, adopted DNR status, and was prescribed morphine for her comfort.
Historically a child’s first birthday is a milestone event. Imagine discovering that your child has a disease with no cure, no standardized treatment, and that almost all affected with this genetic condition do not survive past the first 6 months of life. Maddie had already outlived her life expectancy upon diagnosis. The Holts were devastated, but realized that they might not have a lot of time with Maddie, and vowed to make each day count.
The Holts were not ready to accept this. Meagan googled pediatric intractable epilepsy. Her search results included Landon Riddle, projectCBD.org, and HaleighsHope. She did more research, finding that cannabis had improved quality of life for many children with life threatening diseases, but Maddie didn’t fit in to any one group: deaf, blind, deaf/blind, cancer, or epilepsy. Seeing that there was no road map for Maddie’s care, Meagan and Brandon decided they had nothing to lose and everything to gain. They pursued alternative care using cannabis. They were fortunate to live in Washington State, which had a strong medical marijuana law at the time.
Maddie started using Full Extract Cannabis Oil (FECO) containing CBD under the care of Dr. Katrina IiamsHauser, hoping for improvement in her physical and mental comfort, and reporting her use and its effects to her care team at Hospice and Seattle Children’s Hospital. Refinement of her treatment regimen included adding THC. Maddie responded with increased expression of emotion, increasing motor skills, and relearning sign language. Community and Canna Family are essential to Maddie’s ongoing use of cannabis. Insurance does not cover the cost of cannabis products, even when authorized by a medical professional. Donations of pesticide free and lab tested FECO come from medical growers, processors, and members of the medical marijuana community in Washington State. Maddie not only lived, but has thrived on her cannabis regimen. Two years later at age 4, she is no longer on hospice, has stopped having grand mal seizures, and continues to improve physically and cognitively. She will always be a medically complex patient. Cannabis did not cure her, but enables her to participate in life and decreases her suffering. She is home schooled one day a week and her progress awes and inspires her teachers, parents, and caregivers. “We watched her do everything she never was supposed to do” Meagan proudly states. Maddie loves music and socializing. Her palliative care team has weaned her pharmaceutical use from a high of 26 drugs in April of 2015 to just 5 in addition to cannabis products. Her current medication list includes: hydrocortisone, Keppra, clonidine, vitamin K, and a aquADEKS (a fatsoluble multivitamin), 45mg of CBD & 20 mg of THC twice daily in the form of FECO, 10 mg THCA twice daily, and as needed for stress, a 5 mg THCa isolate as needed for seizure rescue, among other therapies. https://youtu.be/OrLyANZpfY (9:30), as well as topical applications to control symptoms caused by Zellweger syndrome. Maddie spent more than 200 days at Children’s Hospital in 2015, about 30 days in 2016, and a week in 2017 for treatment of Rhinovirus.
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The Holts have always been open with their care teams about Maddie’s use of cannabis for quality of life. “I give her a plant. I NEVER have and never will hide Madeline's cannabis medicine from her providers because it is crucial to her care. I am completely open and honest about dosing, administration, cannabinoid content. Through positive engagement, by reminding her providers that I am a critical member of her care team they listen. Imagine being in their shoes. Imagine telling a family, it's time to start making end of life plans, we are out of options. Imagine that same child coming back to the hospital off of all those drugs you knew she would die on? Imagine watching cannabis save a life? I advocate for cannabis patients and the providers who are desperate for research. By educating my daughter’s medical team, showing them cannabis works, they support us. They uplift us, and they accept cannabis as a part of her care even when being admitted”. Children’s Hospital does not administer or provide any cannabis products to Maddie, but does not obstruct the Holts from administering the cannabis products to Maddie while she is an inpatient. Holt also credits Children’s Hospital for helping her develop her advocacy skills and giving her a more powerful voice through the supportive programs they offer to patients and families. Meagan has been a strong and vocal advocate of families affected by rare diseases, patient rights, for cannabis education, and safe access to cannabis. She has worked with groups such as Hempfest, NORML Women of Washington, 22 Too Many, and Project PC. She publicly protested the profound changes made to the medical marijuana law in Washington State by House Bill 5052 in 2016 (ironically titled The Patient Protection Act 2 ).
Maddie engaging with Pediatric Nurse Juhlzie with mother, Meagan Holt. April 28, 2017
Schools have the power to adopt cannabis policies for children who need it in Washington State. However, no school currently has a policy for children to use cannabis at school. That leaves special needs students like Maddie, who use medical marijuana in non-smokeable forms throughout the day, without access to safe education. Meagan initiated legislation in 2017 to allow non-smokeable administration of medical marijuana on school grounds for pediatric medical marijuana patients through her legislative representative. She testified at the hearing for House Bill 1060, also known as "Maddie’s Law" and "Ducky’s Bill", sharing Maddie’s life story with the committee members with the hope that the bill may allow Madeline to attend kindergarten. The bill remains in committee for the 2017-18 legislative session, meaning Maddie will be homeschooled for the next year. What’s next for the Holts? A long wished-for family trip to Disneyland, ongoing legislative and educational efforts to normalize and ensure safe access to cannabis for children at home and at school, and the publication of Meagan’s poetry and journal entries, titled Just Breathe Baby. Meagan will be speaking at Hempfest in Seattle (August 18, 19, &20, 2017). Maddie’s progress can be followed at Madelines Whole Plant Journey on Facebook.
Sources: Sources: 1.
https://www.ninds.nih.gov/Disorders/All-Disorders/Zellweger-SyndromeInformation-Pag
2.
http://q13fox.com/2016/06/30/hundreds-of-medical-marijuana-stores-shutdown-with-new-rule-kicking-in-july-1st/
Other Resources/Videos on Maddie: https://www.ninds.nih.gov/Disorders/All-Disorders/Zellweger-Syndrome-Information-Page https://youtu.be/OrLyA-NZpfY
Meagan and Maddie. Cirque 2017
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Dravet's & Prevention
By: Jennie Stormes, RN, BSN, MSN Student
“Jaxs” Update (Dravet’s & Prevention) Continued from CNM May/June 2016 Issue (pg.14-15) Jackson Stormes, known as “Jaxs” has Dravet syndrome, a complicated and devastating form of epilepsy caused by a genetic mutation, SCN1a. In the past 18 years, Jackson has failed over 70 pharmaceutical combinations, 2 brain surgeries, multiple trials on the ketogenic diet, and the vagul nerve stimulator. In 2012, Jackson was started on cannabis: high CBD and THC in approximately 20:1 ratio and he thrived and did so well. He was weaned from phenobarbital, klonopin, onfi, stiripentol, Depakote, and the ketogenic diet. Although there was a medical program in New Jersey, it was not up and running, nor would it prove to be functional for Jackson’s medical needs. In 2014, Jackson and his family relocated to Colorado for better access to the life changing cannabis medication. Shortly after moving to Colorado, Jackson began to decline and the local health professional did little to help because Jackson was on cannabis, especially the THC. Despite the situation, I continued with the cannabis and made changes to address the new diagnosis of Juvenile Parkinonism, declining skills and abilities, and loss of progress gained with the cannabis treatment. Jaxs went from a 20:1 CBD to THC to increase the THC to lower the ratio to 3:1 CBD to THC. He was getting cannabis for emergencies, seizure clusters, or times of illness to bridge the lowering seizure threshold. Cannabis was the safest option for Jackson, after all, he had failed 98% of the known pharmaceuticals used to treat seizures or Dravet, and even tried some long shot options without success. Last summer, a few additional pharmaceutical options were attempted with one new drug and retrying another drug from the past he had failed, in addition to the cannabis treatment. The pharmaceuticals were not expected to help much with Dravet, but worth a try and came with many known serious side effects, but the cannabis was not working well to control the seizures. Jaxs was declining and few noticed or cared. Jackson’s seizures were getting worse with longer seizures occurring more frequently. He could not walk without support, he lost almost all of his speech (had over 200 words counted in 2013), could no longer assist in any capacity with his activities of daily living, no longer able to feed himself, and he just stopped eating with these new drugs.
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The fycompa was the first new medication with devastating effects. His body contorted more and he lost more skills and abilities. He could not move or reposition himself and he was locked in his rigid body. He still had the seizures with the Dravet and the Juvenile Parkinsonism, but now he had more seizures. He was completely GT fed and was throwing up everything all day, every day. The formula was healthy, organic, non-GMO, vegetarian, and covered by Medicaid. He needed to stop the fycompa medication as it was not controlling the seizures, but making him worse overall. Since the cannabis was not controlling the seizures and now the emesis was problematic, he was losing weight and now considered a failure to thrive barely holding his weight at 100 pounds. Jackson was retried on felbatol. All of the side effects continued with the emesis, failure to thrive, increased seizures, and worsening of the dystonia and Parkinsonism. Jackson ended up in the hospital where they stopped the felbatol with no plan. They had no plan because Jackson was on cannabis and had already failed all the other drugs, Some of the meds, like the felbatol, have been tried more than twice. The neurologist sent him home from Denver Children’s Hospital without a replacement pharmaceutical, refused to increase the very low dose of the other pharmaceuticals he was on, because of the cannabis medications. Jackson’s seizure got even worse.
Dravet's & Prevention Finally, he had endure enough distress with the emesis and all formula was stopped. A blend of real food prepared by mom consisting of spinach, beef, garlic, and almond milk. He stopped throwing up. A few weeks later, he began to want to eat by mouth. Without the help of doctors, other than adjusting the pharmaceu- ticals, we were figuring out what was going on and healing Jackson. It was decided Jackson would enter the fenflurmine drug trial. or this medication he would need to be cannabis free. his new adult pileptologist was willing to ad ust medications and to safely take him off of cannabis in a controlled environment. e were not afraid of the cannabis, but more afraid of the seizures. he cannabis was stopped over days and there were no seizures. he seizure medications were increased to maintain seizure control, but not any benzodiazepines, narcotics, or other dangerous drugs he had been weaned from with cannabis in . ith the cannabis break, the oversaturated cannabis receptors could rest and some of the skills which were lost over the past years since moving to Colorado were coming back. aking a break and carefully selecting an appropriate treatment plan to control the seizures has allowed for Jackson to begin eating better, gaining pounds. He started walking everywhere, with transitions, transfers, and balance. hings are being placed in the microwave, sink, or other hiding places with glee. His smile is bright and he pushes himself to re-learn what he lost.
We discussed stopping cannabis, but he was not on any significant dose of a seizure drug and stopping cannabis would be dangerous and life-threatening. I was told by the neurologist during an outpatient visit, the "I got him on cannabis, I could get him off of it." Without prescriptive authority I cannot adjust or change his pharmaceuticals and without their help, I cannot change the cannabis. He continued with daily seizures, emesis, weight loss, and failure to thrive. he acceptability of cannabis, especially HC for children, by some physicians is a game of smoke and mirrors. At the end of we found a great adult pileptologist to assume Jacksonâ&#x20AC;&#x2122;s care, includingthe cannabis use as a seizure treatment. Jaxs was a hot mess with the seizures so out of control, he was close to suffering a deadly seizure. ith the help of this pileptologist, his pharmaceuticals were increased and a new one was added Briviact, a relative drug to eppra, but without the side-effects of rage and behaviors. he seizure activity went from subclinical seizure every minute with multiple - minute seizures daily to one per week with no subclinical seizures. He was stabilizing and getting better with this adjustment in the antiseizure medications. Jackson was still completely tube fed and the specialists wanted to give him a permanent j-tube to address the still constant emesis.
Why is this Important? Cannabis is a medication and was responsible for healing Jackson when he needed it, however as expected, his needs are changing constantly. While he is better off at this time without cannabis in his regimen I will be keenly obsering for any changes that clue me in that he needs a change in his treatment at which time I would again start the process of determining what ratios would benefit him. hat we have learned and will discover with time, is that cannabis can be complicated and can be confusing, especially in comple children. he Parkinsonism is regressing. hat cannabinoids were messing with the dopamine levels and or receptors causing dystonia, tremors, shuffled gait, and other neuromuscular concerns ven though cannabis, or CBD, is not to ic or deadly, at what dose does CBD stop helping and make symptoms worse or more difficult In Jackson's case, it appears that higher amount of CBD for prolonges periods of time made his symptoms worse. In patients who are non-verbal, dosing can be more difficult with finding the sweet spot, correct strain, or appropriate ratio. Because research is limited on cannabis in America, it is still unknown why a cannabis break is important for chronic, debilitating, and devastating disorders. It is known that cannabis breaks do allow for the Endocannabinoid System to reset itself, but it is unclear why this break is so important for chronically ill persons. Although it is consistent with Dravet to be pharmaco-resistant, when medicaitons sotp working after a short period of time, cannabis was not as sensitive. It took 4 years before a break was needed and changes necessary. What is clear? We need to be able to do research and understand cannabis as a medication, applications, pharmaceutics, and more.
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Medical Cannabis in Schools: Integrating the New Norm with “Jack’s Law”
Colorado’s Medical Marijuana As Colorado continues to implement Amendment 20, the legal Program and Children ramifications continue to unfold. Since Cannabis is still a Schedule 1 By: Stacey Linn (Mother of Jack Splitt) Colorado’s medical cannabis program began with the passage of Amendment 20 in 20001. Cannabis was legalized to treat a specific list of medical conditions, as designated in Amendment 20, with the Colorado Department of Health and Environment (CDPHE) having authority to add conditions. These conditions currently include: Cancer, Glaucoma, HIV or AIDS, Cachexia, Persistent Muscle Spasms, Seizures, Severe Nausea, Severe Pain, and Post Traumatic Stress Disorder (PTSD)2 . Since then, thousands of families have relocated to Colorado to treat themselves and/or their loved ones after pharmaceutical options failed them. Among these patients are children who suffer from life-threatening disorders/diseases such as epilepsy, cancer, cerebral palsy, and other genetic disorders that cause neurologic and muscular symptoms, as well as extreme pain. Cannabis provides them relief of symptoms, healing from their ailment, and a path to their highest possibility of health. To many families, this healing plant has been nothing short of a miracle.
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substance, making it federally illegal, patients face considerable risk following the path of cannabis treatment. Even in Colorado, laws and rules of governance have not caught up with legalization of medical cannabis, and the stigma of using a “controlled substance” haunts parents at the doctor’s office, school, hospitals, long-term care facilities and in the Child Welfare System. Patients, and especially parents of pediatric patients, face serious risk of persecution. Doctors, school personnel and social workers are still quick to report even legal cannabis use to child protective services (CPS). Unfortunately, the resulting investigation whether substantiated or not, causes significant harm to families who are already living under duress. Despite the scientific evidence that cannabis effectively treats a myriad of conditions such as epilepsy and cancer, there is considerable work to be done in order to bring cannabis treatment into the mainstream, both socially and legally. The key to propelling change is education. In our medical paradigm, Nurses are best positioned to lead this change. Nurses are on the front line with both patients and doctors (both traditional and those who recommend marijuana) so they must be equipped to deliver knowledge on the Endocannabinoid System (eCS), treatment delivery options, and the laws/rules governing the use of cannabis. Nurses can lead both doctors and patients into a new health paradigm that includes the natural, holistic benefits of the cannabis plant.
Children and Medical Cannabis: One of the most vulnerable populations currently using medical marijuana are children—not only medically, but socially. As of April 2017, there are 292 children on the Colorado Medical Marijuana Medical Registry age 0-17, and 2,812 age 18-203. Many of these children are medical refugees whose families left everything in their home state to try cannabis as a desperate, last ditch effort to save their child’s life. Many families move here quickly, without resources or support, and without any knowledge of Colorado’s marijuana laws, medical or school systems, or what cannabis treatment even looks like. These families are very vulnerable to begin with due to the nature of their child’s condition and often struggle to survive. Fortunately, once a parent discerns the proper course of treatment, cannabis begins to heal their child, bringing hope and vitality back to the child and the family. However, without the proper support and education, some families do not even reach this point. That’s where cannabis-specific foundations, support groups, nurses and doctors come in. There are several organizations in Colorado which patients and their families can join to help them learn to navigate their medical marijuana path. For example, CannAbility Foundation11 provides advocacy,
The procedure for having a Nurse administer medication to a child at school is simple: Submit a doctor’s note stating the necessity, dosage and time of administration. A nurse or nurse’s aide administers the medication in the school clinic. However, because marijuana is still a Schedule 1 federally illegal substance, schools do not allow it on campus, much less allow nurses to administer it. In addition, most schools are considered “Drug Free Zones” under Federal regulation. Tragically, pediatric medical marijuana patients who have finally achieved a level of health that allows them to thrive and engage in their education, are barred from attending school.
Jack’s Law: Accessing Medical Cannabis in Schools I experienced the school barrier in the February of 2015 after I began treating my son, Jack Splitt, with cannabis to treat his severe spastic quadriplegic cerebral palsy complicated by severe and debilitating dystonia. Jack went to school with a private duty nurse (PDN) because he was on life support, wheelchair bound, deaf, nonverbal and fully dependent on others for all Activites of Daily Living (ADL’s).
resources, education, and financial support; American Medical Refugees specializes in community support and resources; and Cannabis Patients Alliance12 unites patients and provides advocacy and information about cannabis and cannabis policy. Patients and their families need Cannabis Nurses to help them work with their cannabis doctors to find the most effective course of treatment, and counsel them on how to work with traditional doctors to incorporate cannabis into their often extremely complex treatment regime. Families access cannabis medicine through dispensaries or caregivers.
So what do children do when they get healthy?
They go to school! Many children have medical issues that require medication in order to successfully engage in their education. Children commonly take pharmaceutical medication at school without issue—even controlled substances such as narcotics and amphetamines (Ritalin, fentanyl patches, etc).
Photo source: Herb.co/Thefreethoughtproject.com
The PDN administered all of his medications, including his cannabis. I did not know that marijuana was prohibited at school and assumed it was okay because he had a medical marijuana card and his cannabis medication was reported on his school health plan. I treated his cannabis like any other medication he was taking. However, the school’s district area nurse did not. The day the school’s district area nurse noticed the transdermal cannabis patch on Jack’s arm, she questioned his PDN about it. Seeing nothing wrong, the PDN fully disclosed what the patch was. The school nurse immediately informed the PDN that it was not allowed, took the patch off his arm, confiscated his THC/CBD oils, and told him he had to go home. The PDN called me at work and reported what happened. I was so outraged that a medical professional would take a child’s medication off his body that I called the local news. They immediately met me at the school and interviewed us. The story aired on Denver’s CBS Channel 7 news that evening4 . The school principal agreed to return the cannabis medication but asked that Jack not return to school with it.
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A few days after the news story aired, I was contacted by Representative Jonathan Singer’s office and Greg Duran from the patient advocacy group, Cannabis Patients Alliance12 . They invited me to the Capitol to see what could be done to address the issue. While we discussed legislative solutions, Representative Singer said to me, “Well, if you’re willing to stick your neck out, so will I.” Being new to the world of cannabis, and assuming it was safe and legally protected, I did not understand why he said that. I would later find out that all is not necessarily safe for the parent of a medical marijuana patient.
He changed the hearts and minds of the legislators that day. The Caregivers Act passed and so did the amendment, which was named “Jack’s Amendment” in Jack’s honor. Governor John Hickenlooper signed it into law in May of 2015 (see below) with Jack sitting across from him. The Governor shook his hand and gave him the pen he signed the bill with. The legislators presented him with a certificate, a Colorado flag and t-shirt signed by everyone at the Capitol to honor his work.
Working with other legislators and the Cannabis Patients Alliance, Representative Singer proposed an amendment to another marijuana bill they were working on, the Caregivers Act which created definitions to regulate “caregivers” who help patients who cannot grow/make their own medicine or access it in a dispensary5 . The amendment would allow medical marijuana on school grounds6 . Jack created quite a stir when he testified in support of the amendment (he’s non-verbal, so I interpreted for him). It was impossible for legislators to deny him access to his passion: Learning.
Unfortunately, schools refused to honor the law, stating that they feared losing their federal funding for allowing an illegal substance on campus. Representative Singer and I sat down again in 2016 to craft legislation to require schools to make policy allowing children to take their cannabis medication on school grounds. Senators Chris Holbert and Vicki Marble sponsored the bill in the Senate. We proposed the legislation based on the federal IDEA law (Individuals with Disabilities Education Act) that states with disabled children are entitled to necessary accommodations to treat their condition in order to receive the Fair and Appropriate Education (FAPE) that every child is also entitled to under federal law7 . The original bill, HB 16-1373, included language that would reimburse schools with money from marijuana taxes for any federal funding they were denied, but was quickly met with resistance and was amended to say that schools could opt out of the policy if they could prove that they lost federal money as a result of a child using medical marijuana at their school8 . The bill required schools to allow medical marijuana use, in a non-smokable
form, on school grounds, at school functions and on school buses, by students who have a Colorado Medical Marijuana card. It also requires that the medication be given in a private location, away from other students,
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and that it be administered by a parent or caregiver who is approved by the school. In addition, the bill included language that prohibited school nurses, and other school personnel from administering the medication (which was included to qualm fears of violating the Colorado Nurse Practice Act- an area that nurses can focus on in the future). CannAbility Foundation, (a non-profit organization I founded in Jack’s honor that seeks to provide advocacy, education, resources to parents of medically fragile children who want to treat their children with medical marijuana) launched a large grass roots campaign to garner support for the bill, which included courageous mothers of severely disabled young medical marijuana patients. Together with a new marijuana lobbyist who worked for us pro-bono because of how cannabis helped her terminally ill father, we educated legislators, the community, and numerous stakeholders (including police, school boards, the Department of Education, hospitals, and anti-marijuana groups) about what medical marijuana is, how it safely administered, and the remarkable healing experienced by the severely afflicted children who use it. We were met with both overwhelming support, and hysterical opposition. We heard statements like, “I don’t want kids smoking weed in the halls and bringing pot brownies to school in their lunch boxes." By educating people about these common misconceptions, we were able to turn the tide. HB 16-1373 overwhelmingly passed
the House by a vote of 56-9. In the Senate, the bill passed committee unanimously with a historic “standing vote” where each committee member stands to cast their vote to honor the people bringing forth a bill of monumental importance to the state of Colorado. The bill then unanimously passed the full Senate, 35-0. The bill was amended to be named “Jack’s Law”, to honor the courageous and charismatic Jack Splitt who, despite the debilitating and painful symptoms of his disease, spent hours at the state Capitol changing the hearts and minds of the legislature and the people of Colorado. To this day, legislators thank him for changing the spirit of marijuana legislation.
Stacey Linn and Jack Splitt during Colorado Legislation. Cirque 2015
The first school district to write a policy implementing Jack’s Law was D49 (Falcon) near Colorado Springs. Douglas County quickly followed suit, adding protection for children taking CBD (hemp falls under different laws than marijuana). And Jefferson County, where Jack went to school wrote a policy soon after that. Each of those policies was influenced by a tenacious mother of a child taking medical marijuana at a school in their district—who also helped worked to pass Jack’s Law.
Jack Splitt’s Story When pharmaceutical options failed, I began treating my then 14 year old son, Jack Splitt, with medical cannabis in July of 2014 to relieve the symptoms of his severe spastic quadriplegic cerebral palsy complicated severe dystonia. This was not an easy decision as I knew nothing about marijuana and Jack was already on 30 or more medications—including benzodiazepines, antiepileptics, antidepressants and anti-psychotics (though he did not have seizures, psychosis or depression). These medications left my intelligent, engaging, life-loving child feeling like a “zombie” (Jack’s words) and unable to engage in learning and socializing—his favorite things in life. I was afraid to add or subtract medications from his treatment plan because, like most medically fragile children, he was sensitive to changes and interactions. Plus, if cannabis did not work, Jack would have been in danger of dying from complications of his condition. He was on life support (ventilator/tracheostomy, feeding tube) so sustaining life was tenuous already. It took another mother of a child with the same diseases reporting success before I would take the plunge. She had treated her son’s seizures with marijuana and noticed the symptoms of his dystonia (severe and constant full body muscle contractions) declining.
She reported being able to titrate her son off many of the destructive, side-effect inducing pharmaceutical medications he was on, a substantial decrease in his pain and dystonia, and a marked increase in his daily functioning and quality of life.
Dosing After obtaining a medical marijuana card through the Colorado Department of Public Health and Environment (CDPHE) Medical Marijuana Registry, I began treating Jack with an oil extract made from a 20:1 (CBD:THC) strain. The recommending physician gave parameters to start dosing this high CBD strain at 0.5mg/Kg of body weight. I administered the oil via his g-tube twice daily. Remarkably, I saw a decrease in his anxiety, spasticity and dystonia within an hour. I consulted with Jack’s neurologist about titrating him off the pharmaceutical medication he was on—a daunting process since those medications are extremely addictive. A few months later I learned that CBN has muscle relaxing properties so tried using CBN transdermal patches applied to his wrist. Again, I saw more relief of his severe muscle spasms. As I titrated more of the pharmaceuticals, it seemed Jack needed more cannabis. His doctor recommend adding THC to his regimen, so I changed his oil to a 15:1 strain and noticed yet more alleviation of his dystonia and pain. As his disease progressed and we experimented with strains and THC levels, we found the best course of treatment for Jack was a high THC oil administered via rectal suppository 3 times daily, and a CBN patch every 12 hours for maintenance dosing. In addition, he used a high THC tincture and/or CBN tincture under his tongue as needed for breakthrough episodes of dystonia. Thanks to Jack’s Law, Jack’s private duty nurse was able to administer his maintenance and rescue doses at school (that made Jack laugh). Tragically, a few weeks after the start of the 2016 school year, Jack Splitt succumbed to his disease. The Denver Post released a front page, four page story about Jack and the passage of Jack’s Law on August 23rd, 2016. (9) Jack was so proud and told me he felt blessed to be able to help other children like him. Having accomplished what he set out to do, he passed away the next morning. With his stunning smile and sparkling blue eyes, his wit and his genuine charm, Jack Splitt changed hearts and minds all over the world, forever changing the face of medical cannabis. He will be remembered for his magical smile, his contagious sense of humor, and his unwavering perseverance in the face of extreme hardship.
Jack Splitt pioneered the way to allow children to take their medicine on school grounds in Colorado. Cirque 2016
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Where Are We Now?
Child Welfare System- CPS
Though several school districts in Colorado have written a medical marijuana policy, many have not. Some have not done so only because they have no children in their district who use medical marijuana. A few, such as Denver, are refusing. CannAbility is currently working with legislators and policy makers to bring them into compliance. Another issue is the inability of school nurses to administer cannabis medication. This is where more work needs to be done in changing legislation. It is cumbersome for parents to get to school to administer medication—and makes rescue dosing almost impossible in a timely manner. In Colorado, nurses can help by pushing to change the Nurse Practice Act to explicitly allow nurses to administer cannabis medication. At the federal level, we must all take action to completely legalize cannabis and get it off Schedule 1 and decriminalize this simple plant.
Perhaps the most important place to change the current paradigm is in the child welfare system. Under current laws, any exposure to marijuana can be considered to be child abuse. Exposure can be as simple as a child being in the presence of a family member’s medical marijuana. Parents who treat their children with medical marijuana are in the spotlight and are in danger of investigation. Any investigation by Child Protective Services (CPS) causes trauma to the entire family—whether there is a finding of abuse or not. In addition, parents who use medical marijuana themselves are subject to scrutiny—especially pregnant or nursing mothers. Most hospitals test newborns and their mothers for THC and report positive findings to CPS, which leads to an investigation. Investigations often lead to removal of the infant from the mother, and at the very least, trauma to the family. Due to lack of education, a gap between child welfare policy and medical marijuana laws, and the prohibitionist stigma attached to marijuana use, many families are unnecessarily persecuted.
Schools Jack’s Law opened the door to discuss pediatric medical marijuana and brought marijuana into schools. We now have a unique opportunity to create education programs to teach parents, school children and school personnel about marijuana— both the medical benefits, and how to prevent children who are not patients from using marijuana. In addition, in the 2017 legislative session, a bill was passed which created the Jack Splitt Memorial Marijuana Education Database10, 13. This database will be used by schools to teach not only youth prevention, but to educate people about what medical marijuana is. Education is the key to changing the laws and the social paradigm surrounding marijuana, so it is appropriate to start that education in schools.
Hospitals School is not the only place that needed a policy change. Children taking medical marijuana generally see several traditional doctors to manage their conditions, and they end up spending a lot of time admitted to hospitals as a result of their conditions. Some traditional doctors refuse to work with pediatric patients who report using medical marijuana, and some become suspicious or give false information about medical marijuana. These practices interfere with effective treatment of often complex medical conditions. Very few hospitals allow the administration of marijuana while a patient is admitted so children are forced to stop the marijuana treatment that is necessary for them to heal, and in fact many of their symptoms worsen while hospitalized. The same holds true for rehabilitation centers and long term care facilities, as well as group homes for disabled children. Providing marijuana education is crucial to upholding patient rights and changing the medical establishment’s view on marijuana. Since nurses are an integral part of this establishment, they play a key role in educating and developing new policy.
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Jack’s Law not only made it possible for children who depend on medical marijuana in order to survive and thrive to go to school, it forged a new pathway for disseminating the truth about marijuana. It is crucial that we build on this momentum and continue to educate institutions on the health benefits of medical marijuana. Jack wouldn’t have it any other way. Thanks Jack!
Sources: 1.Amendment 20, http://www.nationalfamilies.org/guide/colorado20-full.html 2.Qualifying medical conditions, Medical Marijuana Registry, www.colorado.gov/pacific/cdphe/qualifying-medical-conditions-medicalmarijuana-registry, 2017. 3.CDPHE, Medical Marijuana Database, employee interview, 6/14/2017. http://www.thedenverchannel.com/news/local-news/marijuana/disabled-jeffco4. students-cannabis-medication-confiscated-school-cites-federal-law 5.SB 15-014, Caregivers Act, http://leg.colorado.gov/bills/sb15-014. Jack’s Amendment, to SB 15-014 http://www.leg.state.co.us/Clics/Clics2015A/ 6. commsumm.nsf/ b4a3962433b52fa787256e5f00670a71/1210d349c232474c87257e34006bafff/ $FILE/150427%20AttachD.pdf 7.IDEA https://sites.ed.gov/idea; FAPE https://www2.ed.gov/about/offices/list/ ocr/docs/edlite-FAPE504.html 8.HB 16-1373, Jack’s Law, http://leg.colorado.gov/bills/hb16-1373. http://www.denverpost.com/2016/08/22/schools-medical-marijuana-jacks-law/ 9. 10.SB-17-025, Marijuana Education Materials Resource Bank, http:// leg.colorado.gov/bills/sb17-025, 2017 11.http://www.cannabilityfoundation.org 12.https://cannabispatientsalliance.org 13.https://localtownpoll.com/issue/58f94c3b40cf460d7bc49cd2 14.http://www.druglibrary.org/SCHAFFER/hemp/medical/can-babies.htm
By: Bonni S. Goldstein, MD
Bio: Bonni Goldstein, MD is the Medical Director of Canna-Centers, a California-based medical practice devoted to educating patients about the use of cannabis for serious and chronic medical conditions. After years of working in the specialty of Pediatric Emergency medicine, she developed an interest in the science of medical cannabis after witnessing its beneficial effects in an ill friend. Since then she has evaluated thousands of patients for use of medical cannabis. She has a special interest in treating children with intractable epilepsy, autism, and advanced cancers, as well as adults with chronic pain, autoimmune illnesses and other endocannabinoid deficiency disorders. Dr. Goldstein recently authored the book Cannabis Revealed: How the worldâ&#x20AC;&#x2122;s most misunderstood plant is treating everything from chronic pain to epilepsy. I have been a pediatrician for 25 years and a medical cannabis specialist for the last nine years, assisting thousands of adults and children with serious medical conditions in using cannabis treatment. I have evaluated hundreds of children with severe epilepsy, autism, and cancer, and have seen many obtain an incredible improvement in their quality of life with cannabis medicine. In medical school, I was taught that cannabis was a drug of abuse. I never thought of it as medicine until I saw a friend with a serious illness have incredible benefits from it. I started researching the scientific literature and was shocked to find that cannabis had so many medicinal properties.
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Since cannabis is classified by the federal government as an illegal substance, clinical trials in humans have been largely prohibited. However thanks to curious and diligent scientists, we have an advanced understanding of how cannabis works as medicine. Plant compounds, called phytocannabinoids, work by interacting with a complex system in the brain and body called the Endocannabinoid System (ECS), a signaling system responsible for maintaining balance of the chemical messages sent between cells. We humans make compounds called endocannabinoids, â&#x20AC;&#x153;cannabis-likeâ&#x20AC;? molecules that are similar to the plant cannabinoids; endocannabinoids work to maintain homeostasis, balance of our cells. If you have an imbalance in these compounds, disease may result. We have only known about this system since 1988, but recent research has allowed us to understand it is critical in the manifestation of disorders previously not been well understood or effectively treated. There is a growing body of evidence that children with epilepsy, autism, and other severe conditions have a dysfunction within their ECS. When not working properly, the chemical messages in the brain are not balanced, and this imbalance is expressed as seizures, abnormal behaviors, and overall poor quality of life. I am often asked why I recommend cannabis to children when THC is thought to be bad for the developing brain. Research shows that a normal functioning Endocannabinoid System is required for the maturation of the developing brain. Adolescence is a time when the developing brain is vulnerable. Interference in the normal brain growth that leads to a healthy adult brain might alter brain maturation. Studies looking at otherwise healthy teenagers who use chronic heavy doses of THC has shown that there is may be increased problems with executive function, impulsivity, memory deficits, attention deficits, and lower overall and verbal IQ.
There are other variables involved in assessing these attributes, but the bottom line is that in a child or adolescent who is medically well, THC should be avoided so that the ECS can do its thing -- function without interference and lead to the desired end result: a healthy and mature adult brain.
epilepsy. Since CBD does not activate the cannabinoid receptor the way THC does, it does not cause tolerance, and as it is not psychoactive, it is an ideal compound for pediatric patients.
What about children that are not medically well? Since we are lacking critical studies, we donâ&#x20AC;&#x2122;t necessarily know longterm effects. But we know that phytocannabinoids, such as THC (tetrahydrocannabinol) and CBD (cannabidiol), have tremendous medicinal value with anticonvulsant, antioxidant, antianxiety, antipsychotic, anti-inflammatory, and antitumoral properties. It is important to note there are no long-term studies of cannabis use in seriously ill children, but those of us who are treating children with cannabis medicine are not witnessing any negative long term effects. In fact, we are seeing children who previously had very poor prognoses with uncontrolled seizures, developmental delay and cognitive dysfunction now progressing developmentally instead of regressing. Many are able to stop using toxic medications that may have not been effective. We cannot compare the healthy teenagers that are chronic heavy users of imbalanced THC-rich cannabis - behavior that may result in interference of normal development - with severely ill children using cannabis that may repair the dysfunctional ECS. Children suffering severe disease and not responding to conventional treatment and/or experiencing intolerable side effects should have an option to use cannabis medicine, as the underlying cause may be within the ECS.
One of my patients, a little girl with complex medical issues including intractable seizures, came to my office at 9 years of age with significant delayed cognitive development, due to both her uncontrolled seizures and a cocktail of anticonvulsant medications. After two years on CBD oil and discontinuation of the pharmaceuticals, she had significant reduction of seizures. Most remarkably, she had learned to read and write during this time, skills her parents never thought she would achieve. This example clearly shows that the brain can heal and develop in children on cannabis medicine.
Cannabis for Pediatric Epilepsy
I have found excellent results using cannabis medicine for children who have intractable epilepsy. These patients have tried numerous antiepileptic medications without success and have devastating consequences of ongoing seizures. The burden of this difficult disorder and subsequent negative impact on quality of life has triggered a parent-led movement advocating use of CBD-rich cannabis. Research shows that people with epilepsy may have an endocannabinoid deficiency, leading to over excitation of neurotransmitters in the brain, leading to abnormal firing of the brain cells. Evidence also points to significant neuroinflammation. Although more research is needed, we know that CBD enhances the brainâ&#x20AC;&#x2122;s own endocannabinoid levels, enhancing the endocannabinoid system. Also CBD modulates the flow of calcium and potassium in neurons, thereby stabilizing these cells. Additionally CBD works as an anti-inflammatory, blocking formation of pro-inflammatory compounds and reducing toxic substances, resulting in a brain that is less inflamed. CBD, with its many mechanisms of action, acts at multiple targets in the brain. This is why it works well for
Case Study
Cannabis for Pediatric Autism
Many parents also come to my office seeking help for their children suffering with Autism. Although the FDA has approved two medications, both antipsychotics, for treating the irritability associated with autism, they have very significant side effects, may not be effective and thus leave these families without a solution.
Preliminary evidence links genetic mutations with Autism and a deficit in the ECS The Endocannabinoid System regulates emotional responses, including anxiety, behavioral reactivity to context, social interaction, and the function of the immune system, all of which are aspects of autism. I have medically supervised the administration of CBD-rich, THC-rich, combination CBD+THC and/or THCA cannabis preparations in dozens of children with Autism. Many parents report improvement in their children, seeing less anxiety, better sleep, improved speech, better focus and learning, and fewer tantrums.
Cannabis for Pediatric Cancer
Parents of children with cancer often seek cannabis medicine to help their children with relief of symptoms from the adverse side effects of chemotherapy and radiation. In some cases, having been told the cancer treatment is not working, parents are desperate to find a cure.
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Cannabinoids have been shown in animal studies to inhibit tumor growth, cause cancer cells to commit suicide (apoptosis), inhibit metastasis and inhibit growth of new blood vessels in tumors. Additionally cannabinoids have also been shown to enhance effects of certain chemotherapeutic agents. There is only one published study in humans that used THC in nine patients with glioblastoma multiforme, an aggressive brain tumor. The study concluded that THC was safe and it inhibited cancer cell growth. Recently a second trial reported by GW Pharmaceuticals showed a longer survival rate for subjects on THC and CBD compared to placebo. Despite these promising results, we are lacking critical human research that answers the questions of which specific cancers respond to cannabis, which cannabinoids to use, what dose to use and what duration of treatment is needed to achieve survivorship. The parents of my patients with cancer are convinced that the addition of cannabis to the child’s regimen has helped them to achieve improved quality of life and in some cases, reduction of disease. Some patients come to me too late in their course, but they often have relief from symptoms and a decent quality of life before they pass.
Cannabis Products for Pediatric Patients There are a number of criteria that I require for the cannabis products used by my pediatric patients 1. Most are using cannabis in an oil preparation, easily measurable and taken sublingually or ingested. The oil should be concentrated. The more concentrated the oil, the smaller the volume that needs to be taken; this is easier to give to an uncooperative child. 2. Consistency of strain is extremely important as epilepsy patients may only respond to one particular strain. 3. All oils must be tested for potency, terpenoid content, and presence of contaminants, residual solvents and pesticides. 4. The oil supply must be reliably available as it is catastrophic for a child with epilepsy who has lower or discontinued other medications to not get their oil. 5. The oil should be affordable. Some parents report that they cannot increase doses because the out of pocket cost is too much. Although cannabis may not work for everyone, it must be an option for all of those who are ill, particularly children. As Dr. Raphael Mechoulam, who has led the investigation on cannabis medicine over the last 50 years, stated, “plant cannabinoids are a neglected pharmacological treasure trove.”
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Sources: Epilepsy
Hampson AJ, Grimaldi M, Axelrod J, and Wink D (1998) Cannabidiol and (-)delta9-tetrahydrocannabinol are neuroprotective antioxidants. Proc Natl Acad Sci USA 95: 8268-8273 (CBD reduces glutamate and has antioxidant effects) – Vezzani A. Inflammation and epilepsy. Epilepsy Curr. 2005 Jan-Feb;5(1):1-6. Lozovaya N, Min R, Tsintsadze V, Burnashev N. Dual modulation of CNS voltage-gated calcium channels by cannabinoids: Focus on CB1 receptorindependent effects. Cell Calcium. 2009 Sep;46(3):154-62 Izzo AA, Borrelli F, Capasso R, Di Marzo V, Mechoulam R. Non-psychotropic plant cannabinoids: new therapeutic opportunities from an ancient herb. Trends Pharmacol Sci. 2009 Oct;30(10):515-27. De Petrocellis L, Ligresti A, Moriello AS, Allarà M, Bisogno T, Petrosino S, Stott CG, Di Marzo V. Effects of cannabinoids and cannabinoid-enriched Cannabis extracts on TRP channels and endocannabinoid metabolic enzymes. Br J Pharmacol. 2011 Aug;163(7):1479-94. Mechoulam R. Plant cannabinoids: a neglected pharmacological treasure trove. Br J Pharmacol. 2005 December; 146(7): 913–915.
Autism
Krueger, Dilja D., and Nils Brose. "Evidence for a common endocannabinoidrelated pathomechanism in autism spectrum disorders." Neuron 78.3 (2013): 408-410. Chakrabarti, Bhismadev, et al. "Endocannabinoid Signaling in Autism." Neurotherapeutics 12.4 (2015): 837-847.
Cancer
Zogopoulos, Panagiotis, et al. "The antitumor action of cannabinoids on glioma tumorigenesis." Histology & Histopathology 30 (2015). Guzman, M., et al. "A pilot clinical study of Δ9-tetrahydrocannabinol in patients with recurrent glioblastoma multiforme." British journal of cancer 95.2 (2006): 197-203. https://www.gwpharm.com/about-us/news/gw-pharmaceuticals-achieves-positiveresults-phase-2-proof-concept-study-glioma Miyato, Hideyo, et al. "Pharmacological synergism between cannabinoids and paclitaxel in gastric cancer cell lines." Journal of Surgical Research 155.1 (2009): 40-47. Nabissi, Massimo, et al. "Triggering of the TRPV2 channel by cannabidiol sensitizes glioblastoma cells to cytotoxic chemotherapeutic agents." Carcinogenesis 34.1 (2013): 48-57. Donadelli, M., et al. "Gemcitabine/cannabinoid combination triggers autophagy in pancreatic cancer cells through a ROS-mediated mechanism." Cell death & disease 2.4 (2011): e152 Donadelli, M., et al. "Gemcitabine/cannabinoid combination triggers autophagy in pancreatic cancer cells through a ROS-mediated mechanism." Cell death & disease 2.4 (2011): e152.
Other Di Marzo, Vincenzo, Maurizio Bifulco, and Luciano De Petrocellis. "The endocannabinoid system and its therapeutic exploitation." Nature Reviews Drug Discovery 3.9 (2004): 771-784. Mechoulam, Raphael. "Plant cannabinoids: a neglected pharmacological treasure trove." British journal of pharmacology 146.7 (2005): 913-915.
What to look for when choosing Cannabis Pediatric Care By: Julie Monteiro, RN, BSK • High-quality physicians with spotless records and are in good standing with the American Medical Association and with their State Medical Board. Do they understand Cannabis Therapeutics and the Science Behind the Plant? Are they willing to learn? • Physicians that know and understand the eCS and the science behind the plant is a must when integrating cannabis care into your child’s care plan. Not all physicians know and understand cannabis. They were not taught in medical school. Now that they know of its existence and then still refuse to know and understand it then, it’s time to look for a new physician who does. • Do they follow State Medical Board guidelines? Doing it the right way matters when it comes to medical cannabis remember that this is not only a medical process but a legal one as well – make sure your physician follows the medical board guidelines and state law so that your approval is legitimate and defensible in court. • Do they offer an Attorney Protection Program? Should you need legal advice or representation, will they arrange a free consultation or referral with a reputable and experienced medical cannabis attorney within your state? If not, have one on your team. Despite it may being legal in your state, cannabis is still illegal at the Federal level due to its Schedule 1 Classification. Be prepared. Is your physician there for you? Once your child becomes an approved patient, are they still there to answer your • questions, assist with problems or concerns with your child’s use of medical cannabis? Continuation of care and a solid medical team throughout the healing process is pertinent to the success of your child’s recovery. • Utilize Nurses who are trained in Cannabis Therapeutics: Adding a Nurse to your care plan team may be useful in navigating the many obstacles that parents face while treating with cannabis therapeutics. Cannabis Nursing is a developing field and not a subcategory of nursing within the American Nurses Association Credentialing Center however, nurses are able to inform and educate patients and direct you to the answers you seek based on their nursing process. (Note: Guidelines by the National Institutes of Health (NIH) on what nurses can or cannot do when it pertains to cannabis are currently being formulated as we speak and will hopefully be released End of 2017).
Beware of Unethical Practices
1. State Laws require that a doctor's office is owned by a doctor - not a layperson just trying to make money. Make sure the medical practice that you get your medical cannabis letter/card from is physician-owned or in compliance with your state laws registry program. 2. The doctor's office should have a fictitious name permit registered with the Medical Board. This permit should be posted in the office and verifiable with the Medical Board at http://www.mbc.ca.gov/Applicants/ Fictitious_Name/ Without a registered fictitious name permit and physician owner, the practice is illegal and any paperwork you get from them is not valid. 3. There is no such thing as a "grow license" under state medical marijuana laws. Approved patients and caregivers should be allowed to grow what is medically necessary for the patient's medical condition according to their state statutes. For instance, in California Physicians are NOT ALLOWED to give a plant number. Some doctors are charging up to $300 for a grow license that supposedly allows you to grow 99 plants - this is not legal nor will it protect you if you are charged with a marijuana crime. Know and understand your state laws! 4. Be aware that Skype evaluations are not valid per the Medical Board. If it is your first time visiting a particular doctor's office, an in-person evaluation is required. 5. Does your state program or provider protect your HIPAA Rights? Is there enhanced patient privacy in regards to HIPAA? What are their requirements and if they are violated, what protections do they have in place? This is the law and important in assuring that your health information remains private. Article source: http://www.canna-centers.com https://www.nih.gov/health-information http://www.mbc.ca.gov/Applicants/Fictitious_Name https://www.hhs.gov/hipaa/index.html
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Tracy Ryan I used to have the perfect life! The world around my family and I was so full of beauty, hope, and everything I had dreamt of was finally becoming my reality. When Sophie came into this world it was as if the last puzzle piece had finally been placed. She was everything I had ever dreamt of, and so much more. Her perfectly round cheeks and her beautiful blue eyes, all the way down to her hair that would shine like strands of spun gold in the sunlight...she was mine and her father's vision of true perfection. We felt invincible! We felt like nothing could stop us and the world was truly our oyster. What we didn't realize was that while this joy was swarming around us with the birth of our sweet girl, a beast was lurking just beyond our sight. In our beautiful baby's brain a rare tumor was growing and evolving, just waiting to rear its ugly head and steal our perfect lives from us. One warm summer day I realized that Sophie’s left eye was shaking, which is called nystagmus1. We took her in to be seen by her pediatrician, and after a string of doctors’ visits over 3 consecutive days, Sophie was in an MRI scanner by Friday of the same week. On June 23rd, 2013 our phone rang on a quiet Sunday afternoon from an unknown number. It was our daughter’s pediatrician that had called to let us know that our world was about to change forever.
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The Fall, The Rise & The Research A Momcologist’s Journey
By: Tracy Ryan (Mother of Sophie) The MRI she had the day before revealed a very rare tumor in my tiny baby's brain called an Optic Pathway Glioma2. We were to appear the very next day at the pediatric oncology ward at her hospital. He explained to us that this tumor had a 90% survival rate, but an 80 to 85% recurrence rate. He also explained that the only option for our precious little girl was chemotherapy. Chemo was only meant to arrest the development of the tumor, and the tumor would never in fact go away. I always say that cannabis found us and not the other way around, and that truly is the case. Through a serendipitous chain of events on social media we found ourselves in the presence of a celebrity I had long admired, Ricki Lake of film and television. She and her producing partner, Abby Epstein, were introduced to us, as they had just started a documentary only six months prior about using cannabis for pediatric cancer. We were shocked when we saw the research they presented us with. How could something with so much medical evidence behind it still be illegal? Four years ago when our journey began there wasn't even public conversation happening around this plant yet. Little did we know how all of that was about to change! Regardless of the state in which this plant was viewed at the current time, we trusted these women and we trusted the research we were presented with. We took in a folder full of clinical research to Sophie's doctors that Ricki and Abby had sent us showing that cannabis oil was killing glioma cells in preclinical mice3. We consulted with Sophie's doctors and got their blessing to try the oils. At nine months old Sophie took her very first dose of cannabis oil on camera for Ricki and Abby's documentary called Weed the People – to be released later this year.
We are now on year four of Sophie's journey battling her beast. She has had her ups and downs, and we have absolutely, as a family, had ours. We have overcome near homelessness, tens of thousands of dollars in debt, 2 recurrences, dozens of hospital stays, brain surgery, more MRIs then we can count, nine blood transfusions, Staph infection, and seizures that have been mild in nature, except for the one that lasted a full, gut wrenching hour. But the miracles we have seen in our child far outweigh the devastation this tumor has taken on her. We have heard the words "medical miracle" so many times now we lose track of the actual number of times it has been said. We kept her from going blind, which was a sentence they served up so easily when she was first diagnosed. We shrank the tumor not just once, but after every recurrence she's had, and this is a tumor that we were told up front wouldn't likely shrink at all. After nine blood transfusions, she just stopped needing them all together; this was four months before she got off her first 13-month protocol of chemotherapy.
Your body's bone marrow is unable to repair itself like this when being taxed by weekly chemo infusions. A miracle her doctors happily attributed to her cannabis use alone. And the list of miracles goes on, and on, and on, and on. This plant wasn't just helping her eat and sleep, and mitigate much of the pain inflicted by her weekly treatments, it was saving her from a life that could've easily been stolen by her beast. Once the initial shock subsided, and we started to see all the beauty that this plant had brought into our lives, we realized what challenges we had to endure just to get to where we were with our understanding of this plant. We looked at the cannabis landscape, and we realized that there was a vacuum in the marketplace for medicines that were crafted for patients, especially children. We also realized there wasn't a lot of dosing support available, and people were really trying to figure this out on their own, sometimes enduring great failures and intense bouts of psychoactivity due to improper dosing they were getting on social media. We decided to make it our mission to remedy this issue. In 2014 CannaKids & SavingSophie.org, our 501c3 non-profit, were born. We worked hand in hand with Dr. Bonni Goldstein and Dr. Jeffrey Raber to help us formulate our patient-focused line of cannabis oil medicines for CannaKids, with a focus on cancer and epilepsy. We really took a hard look at terepene profiles4 and how they can support healing. In the last two years, we have continued to evolve our offering of custom blends to include additional issues like ADD, ADHD, Autism, severe pain, and sleeplessness, with the knowledge that these same blends can in fact help many more issues. The relief that we have seen in our patients has been nothing short of amazing!
After experiencing the many miracles I had been so incredibly blessed to witness, I thought to myself, “What’s next?!” What I realized deeply after many conversations, and after immersing myself in research, is that we are all still really guessing when it comes to dosing and strain profile use. In 2015, I was introduced to Professor Dedi Meiri5 from the Technion Institute of Technology in Israel by Abby Epstein from our Weed the People documentary. Dedi was described to me as being one of the foremost leading researchers in cannabinoid treatments for cancer6. I was elated to make his acquaintance, and solicit his help with my daughter. What was to unfold next was something beyond even my greatest dreams and expectations. When Dedi and I began our friendship on our “get to know you” call, he realized that I wasn’t just a mom looking for help. I educated him about the data we had been tracking and how meticulous we had been in doing such. When he asked if he could have it, my immediate answer was “ABSOLUTELY!” For me it has always been about the patients, and what better way to help them faster than by sharing our findings for his research.
Photo Source: www.stljewishlight.com
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When I got the guts to ask him for help with Sophie, he was happy to return the favor. I hand delivered Sophie’s very last sample of cells from her tumor biopsy surgery from when she was one year old in hopes that they could help me find a solution for her tumor. I traveled across the world with a tiny brown box, on a 17-hour flight with my dear friend Autumn, in hopes to find healing for Sophie in the holiest of lands. This was a trip that would forever change my life, for it was on this trip that Dedi asked me to be his partner.
The research findings that Dedi and his team are making gives me so much hope for a better and more effective way of treating cancer, with hospitals waiting in the wings for us to start human trials. And best of all, his team is working on a formulation for my sweet, sweet girl.
Life could have been very different for us, and for our patients had this plant not found us. It’s hard to believe that because my little girl got sick all of this has come to When I returned to the U.S. I knew I had fruition. I am convinced now a lot of work to do to officially secure a more than ever that this wasn’t just partnership with Dedi and his team. I was my purpose, it’s why God gave me introduced to Rob Davidson at CURE breath in the first place. Pharmaceutical, and it was in that first meeting that Rob and I knew we wanted to stay connected and try to work together. We began a wonderful relationship through our shared love for children, and our innate desires to help those that are suffering. Rob and his team had built CURE’s FDA and DEA licensed pharmaceutical lab so that they could produce a patented oral thin film (OTF) technology. They invented the OTFs to help dying children in third world countries who were dying of Malaria due to the absence of clean drinking water required to mix their malaria powders in. As my relationship evolved with both men, it was clear that together we would make an amazing team! And with that, Rob convinced his board to fund Dedi’s next four years of cancer research. Just weeks after we have made our official announcement that CannaKids and CURE have officially partnered with Technion, I sit here writing this article still pinching myself in disbelief as to how far we have come in just four short years. Sophie is thriving, and the healthiest she has ever been. She’ll start school in the fall, and just performed in her very first dance recital. I have been traveling the world, speaking at conferences, and sharing our stories of survival to anyone who will listen.
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Sources 1.
https://www.aapos.org/terms/ conditions/80
2.
https://www.uptodate.com/contents/ optic-pathway-glioma
3.
https://www.ncbi.nlm.nih.gov/ pubmed/9771884
4.
https://www.esciencecentral.org/ journals/cannabinoids-and-terpenes-aschemotaxonomic-markers-incannabis-2329-6836-1000181.php? aid=57624
5.
http://dmeiri.net.technion.ac.il/ selected-publications/
6.
http://dmeiri.net.technion.ac.il/ research/
Email: info@cannakids.org Website: www.CannaKids.org Facebook: https://www.facebook.com/ MyCannaKids/ Instagram: @mycannakids Twitter: @mycannakids
ADVOCACY
Autism and Cannabis: One Mom's Journey By: Brandy Williams (Mother of Logan)
State of Arizona
Logan’s meltdowns could last up to three hours. All I could do is sit on the floor and hold him to my chest as tight as I could, and block as many blows as possible. He would thrash around violently. My body felt like I was hit by a truck after those episodes. I couldn't imagine what my son felt. One day I got a small dose of what he went through. My son head butted me so hard, I ended up with a pretty serious concussion. I still have vertigo spells, and I get really bad migraines to this day. Was Logan experiencing reoccurring concussions, Total Brain Injury (TBI) from all the head banging?
PROPERTY DAMAGE
www.MAMMAUSA.org DIAGNOSIS Logan had a regression in developmental mile stones at one years old, and that’s when the alarm bells started ringing. His pediatrician dismissed my concerns, but I kept pushing forward to find answers. Logan was diagnosed with Regressive Autism, and Encephalopathy on Feb. 20th, 2013. The developmental pediatrician told me that my son was severely Autistic, and I didn't even know what Autism was. She told me Logan most likely will never speak to me, and that I would be my son's caretaker for the rest of his life, or mine. During the appointment the doctor observed abnormal eye movements Logan had, and she sent him in for an EEG. He went on to receive another diagnosis, Absent Seizures. Logan was also diagnosed with Enterocolitis in May 2016.
As Logan moved out of the toddler stages, his aggression became even more concerning. Every single door in our home had a hole on it on both sides. The master bedroom door was ripped off the hinges. The metal front door had 30 dent marks on it from Logan banging his head. He destroyed all of our dining room chairs by slamming the backs of the chairs down to the ground, over and over. Logan put his head through the living room window. The drawer faces and cabinet doors in the kitchen and bathrooms were all damaged from him slamming them over and over.
ISOLATION Going into public was a nightmare. We couldn't go to the store. We never ate together as a family in a restaurant. No movies, no family vacations. We tried to take Logan out into public and do normal things as a family. We wanted him to have as much fun as possible. But to be honest, it was the complete opposite. Logan didn't have fun at all, and it was quite overwhelming for everyone. Logan would just drop to the ground and scream. And everyone would stare, make rude comments, and give us dirty looks.
SELF INJURIOUS BEHAVIOR AND AGRESSION As soon as Logan woke up and his feet hit the ground, everyone was on high alert. Logan used to bang his head 75-150 times per day. His needs were so extensive, we had a Habilitaion specialist in our home for 40 hours per week. My sons HAB worker and I witnessed him head butt a brick wall, and the concrete patio. Those memories will never leave my mind. I thought Logan’s head was going to cave in. I was so worried about skull fractures and concussions. When the ER doctor showed me how to tell if a skull had been fractured, my stomach started to roll.
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Sensory Issues Logan has such bad sensory issues, and hated wearing clothes and shoes. He would rip the clothes off his body. When we could get shoes on him he would sit on the ground and bring his foot to his head with his hand and bang his head with his shoes. This made it extremely difficult to get Logan to therapy and preschool on time. Transitioning him to the car was one of the hardest feats of the day, as well as diaper changes.
Sleepless Nights Logan had to sleep in our room. I was always afraid of him eloping, or having a seizure in the middle of the night. We would turn everything off around 9:30 -10PM, and Logan would lay in bed and flop like a fish. He would jump up periodically, and open and close the door five or six times. Lay back down, flop back and forth, then jump up and open and close the washer three or four times. Eventually he would pass out from exhaustion at one, two, or three in the morning. Sometimes he would fall asleep for 3 or 4 hours, and wakeup and start stimming. We had to sleep with one eye open most nights.
CANNABIS SAVES THE DAY! Day One All that changed June 19th, 2015. I gave Logan his first dose of Full Extract Cannabis Oil (FECO) and 20 minutes later his hand flapping, jumping up and down, verbal stims, and teeth grinding all slowly started to melt away. He came and SAT DOWN next to me for a long time, and watched a movie with me for the first time in his life!
Logan has Speech! Logan added 180 new words to his vocabulary in the first two months, and his ATEC score dropped 56 points in six months! Before cannabis, Logan was non-verbal before. We worked really hard on speech. He could only approximate 10-15 words at any given time. But he would regress often, and I would never hear him say the words again. Now Logan will say almost every word I prompt him to say, and now he has over 200 words he can use spontaneously and in the proper context. He can verbalize his basic needs, and he keeps adding speech. No regressions.
Thriving in Therapy and in School Logan can sit through an entire therapy session, and attend a therapist lead task. I felt like therapy was such a waste of time before cannabis. Our whole therapy session was spent waiting out meltdowns, and now he actually engages in therapy. Logan is no longer a threat to teachers and peers. We wrote his IEP and in 52 days he mastered all his goals. His teacher told me she has never see a student blow through their goals so quickly and easily. He can say his ABC’s, shapes, colors, and he can Photo by Brenna name at least King two dozen animals and mimic their sounds. He can count to count to 20, and can name all the coins.
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Self Help Logan is potty training! He is going on the potty at school, and at home. If he soils his diaper, he lets me know, and is completely cooperative. His sensory issues are attenuated. He gets dressed in the morning no problem. He can even dress himself most of the way.
Social/ Emotional
Logan makes eye contact with everyone now. He says hi and bye to people. He is aware of his environment now. He is actually responding to his name when I call him, and his receptive speech is amazing! He is responding to the things I ask him to do. Like find your shoes, or throw something away. It’s much easier to redirect Logan, and avoid melt downs all together. We can eat together as a family at restaurants now. He can go to the grocery store with us, and he even gives me time to read the labels. Most of the time he behaves better than the nuero-typical children. We actually have FUN out in the world. We have taken him to the water park. We visited the snow. We took our first family vacation to Santa Monica last summer. We have a sense of normalcy in our lives now. Cannabis attenuates the frequency, duration and intensity of Logan’s melt downs, anxiety, aggression and self injurious behaviors and it helps Logan self regulate. It also attenuates his speech apraxia, dyspraxia, bruxism, stimming, seizures, and reduces inflammation in his brain and gut.
Logan’s Medicine Logan takes FECO twice a day on food. One dose before school, and another after school. The more strains we mix in the oil the better! I am learning how important terpenes are. We like to add in Nature Nurse™ CBD chocolate in his diet like a vitamin. A lot of the glycerin based CBD tinctures are problematic with Logan’s gastro issues, so the chocolates are perfect! Cannabis is therapeutic for ALL of the conditions Logan has.!
My Advise to Parents Start low and go slow. Everyone's stories are great guidelines, but
keep in mind everyone is different. Johnny's sweet spot isn't going to be the same as Logan’s. KEEP a journal and Log everything. It will help you figure out whats working and whats not. Buy small amounts until you find what works. That way if it doesn't work your not wasting money. LISTEN to your child and never stop learning!
Cannabis Nurses- Our Heroes I first met Nurse Heather Manus at the Southwest Cannabis conference in October 2015, and I have been bugging her ever since. Logan has always been a big fan of blonds, so of course they connected right away. Arizona Cannabis Nurses Association filed a petition on behalf of Arizona Autism Families in January 2016, and again in July 2016. They still continue to fight for other conditions to be added and are leading the way by example.
Logan sitting the first time with Easter Bunny, April 2017
Logan Shopping cooperatively with Mom on candy isle, 2016
References & Resources: Brandy Williams (Mother of Logan) Logan’s AZ MAMMA Mothers Advocating Medical Marijuana for Autism, Arizona State Director MAMMA's website: https://www.mammausa.org Logan and Nurse Heather, August 2016
Family Impact When we first started this cannabis journey, the goal was to just get the seizures to stop. I was not expecting much outside of that. Cannabis ended up saving the sanity of my family by providing my son with relief. Some Autism patients have no medical explanation for their self injurious behavior. Risperdal and Abilify should not be the only option us parents are left with. It turns out I wasn't the only parent out there that felt that way. I joined forces with a grassroots organization established in Texas in 2014 called MAMMA; Mothers Advocating Medical Marijuana for Autism. I was asked by the founder, Amy Lou Faywell, to start the second MAMMA’s chapter in Arizona.
http://65270571-826658179892236009.preview.editmysite.com/ uploads/6/5/2/7/65270571/ variationinhumancannabinoidreceptorcnr1geneautism.pdf http://65270571-826658179892236009.preview.editmysite.com/ uploads/6/5/2/7/65270571/autismassociatedneuroligin-3mutationscommonlydisrupttonicendocann abinoidsignaling.pdf http://65270571-826658179892236009.preview.editmysite.com/ uploads/6/5/2/7/65270571/ canautismbetriggeredbyacetaminophenactivationofendocannabin oidsystem.pdf www.NatureNurseHealth.com www.AZCNA.com
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Intro to Cannabis for Autism By: Nurse Janna, RN, BSN, Holistic Nurse & Warrior ASD Mama
In the Autism Parent community, word spreads FAST. If you’ve been paying attention, you’ve surely heard the stories about seemingly miraculous results from a parent who discovered cannabis for their Autism Spectrum Disorder (ASD) child. I’m one of those parents, and can personally vouch for the extreme positive potential of this most controversial herb. As a Holistic Nurse focused on natural alternatives to pharmaceuticals, residing in a cannabis-legal state (Oregon), learning how best to apply medical cannabis therapy was a logical decision for me. Cannabis quickly became a major life passion, as this amazing plant was integral in saving my own ASD teen daughter from out-of-home placement. I thought of doing what many consider unthinkable (foster placement), due to safety concerns when my daughter suffered a major puberty crisis, with highlevel behaviors including self-injury, aggressive rages, and property destruction. I can attest: there’s nothing more helpless than watching your child suffer to the extent of injuring themselves and others in a blind rage. The trauma of puberty crisis is experienced by an estimated 50% of Autism families, and is therefore an exceedingly common presentation during many a child’s coming-of-age1. Having been there myself, I completely empathize and
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offer hope of resolution upon connecting with kindred ASD parents. After recovering my own daughter from her ASD puberty crisis, my resulting passion turned our trauma into purpose: to help other families. I’ve since personally guided many ASD parents through optimal application of cannabis therapy. For most it has provided safe and effective relief, and eased their family crisis. As an added bonus, many using cannabis have successfully weaned off harmful mental health pharmaceutical medications, some of which have permanent side effects (google extra-pyramidal symptoms- not a good scenario). *Disclaimer: I highly recommend medical oversight for pharmaceutical weaning.* The only shame of this process is how many parents don’t consider cannabis therapy until every other option to manage their ASD child is completely exhausted. No judgment by the way. It’s lack of education about cannabis that prevents consideration of this safe and effective option. Now that word is spreading, many parents are using cannabis as a crisis prevention strategy (sometimes well before puberty) and the ASD biomed treatment addage “the earlier the better” certainly seems to apply.
I want to be clear that the goal of medical cannabis use for ASD isn’t for parents to get their kids “high” to mellow them out. Instead, the goal is to improve internal balance and optimize function, through individualized microdosing and experimenting to find the “sweet spot” titration. The experimentation process is needed because individual cannabinoid needs vary greatly. With successful medicinal cannabis titration, even with use of psychotropic components such as THC, a “high” is rarely discernable. With successful medicinal cannabis titration, even with use of psychotropic components such as THC, a “high” is rarely discernable. Now for the science supporting cannabis therapy for Autism. First and Foremost: Endocannabinoid Deficiency Predisposes Autism (2). Read that a few times and let it sink in for a minute. For those who are brand new to the Endocannabinoid system (ECS), think of it as the motherboard that manages the interactions within and between our body’s organ systems. The role of the ECS is homeostasis (maintaining balance) throughout the rest of the body. In response to an imbalance, the ECS will intelligently rebalance what’s out of skew. This includes some important areas for treating ASD such as neurotransmitter balance, immune modulation, and mitigating inflammation (3). In fact, one cause of ASD is genetic Endocannabinoid System receptor mutations which lead to ECS deficiency (4). The cannabis plant has the most prolific source of phytocannabinoids available to supplement what is lacking in the ECS of those with ASD. This explains why cannabis can have such a profoundly positive impact as an intervention for Autism. So, how exactly does cannabis benefit one with Autism? Well, let’s start with symptom management. Cannabis is very effective at minimizing or completely stopping extreme Autism behaviors before, during, or after puberty. The anxiolytic (5), pain-relieving (6), and anti-inflammatory (7) effects of cannabis seem to come in particularly handy for managing Autism behaviors. In addition, cannabis is considered very safe with much milder side effects compared to its pharmaceutical alternatives (8). Hence the symptom management piece that is renowned for alleviating harsh situations in ASD families, even when at or near their breaking point.
In addition to its symptom management efficacy, cannabis also promotes balance of some underlying issues that cause Autism…hence my inclination to call it potentially “curative”. Biomedical ASD 101: Autism is caused by a combination of genetic and environmental impacts that result in pervasive imbalances, predominantly in the gut, brain, and immune systems (9). When cannabis activates the Endocannabinoid System, the effect includes balancing of all three of these major organ systems gone defunct in ASD. Cannabis is immune modulating (10), neurotransmitter balancing and neuroprotective (11), plus anti-inflammatory to the gut and brain (7,9), to name a few of the profound curative effects. Cannabis itself has definitely been one of the “big hitters” in recovering my own ASD daughter, who made more progress between the ages of 11-14 (post-cannabis) than in the biomed-heavy decade prior. If you have a child with Autism who you believe may benefit from cannabis, but are unsure where to begin, I highly recommend connecting with Mother’s Advocating Medical Marijuana for Autism (MAMMA). I urge you to seriously consider this safe and effective therapy if you have a child with Autism. For more information about Nurse Janna, please visit: http://www.integratedholisticcare.com
Citations / Resources: 1.
Ballaban-Gil, K. et al (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric Neurology, 15(3):217–223
2. Chakrabarti, B., Persico, A., and Battista, N.(2015). Endocannabinoid signaling in autism. Neurotherapeutics, 12(4): 837–847. 3. De Petrocellis, L., Cascio, M. G. and Di Marzo, V. (2004) The endocannabinoid system: a general view and latest additions. British Journal of Pharmacology 141, 765–774. 4. Dilja, D., Krueger, N. (2013) Evidence for a common endocannabinoid-related pathomechanism in autism spectrum disorders. Neuron: 78(3):408–410. 5. Blessing, E., Steenkamp, M., Manzanares, J., Marmar, C., (2015). Cannabidiol as a potential treatment for anxiety disorders. Neurotherapeutics: 12(4):825-36. 6. Russo, E. B. (2008). Cannabinoids in the management of difficult to treat pain. Therapeutics and Clinical Risk Management, 4(1), 245–259. 7. Nagarkatti, P., Pandey, R., Rieder, S. A., Hegde, V. L., & Nagarkatti, M. (2009). Cannabinoids as novel anti-inflammatory drugs. Future Medicinal Chemistry, 1(7), 1333– 1349. 8. Medical Marijuana vs. Traditional Pharmaceuticals (2016). Medicinal Marijuana Association, accessed online at: http://www.medicinalmarijuanaassociation.com/medicalmarijuana-blog/infographic-medical-marijuana-vs.-traditional-pharmaceuticals 9. Caroline, G., Lopes, S., Silva, P., et al (2011). Pathways underlying the gut-to-brain connection in autism spectrum disorders as future targets for disease management. European Journal of Pharmacology, 668:S70–S80. 10. Thomas, W., Klein, L., Newton, C., Larsen, K., et al (2003). The cannabinoid system and immune modulation. Journal of Leukocyte Biology. 74(4): 486-496. 11. Hampson, J., Grimald, M., Axelrod, J., Wink, D, (1998). Cannabidiol and tetrahydrocannabinol are neuroprotective antioxidants. National Academy of Medial Sciences, Vol. 95, pp. 8268–8273.
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Nurses Responsibilities - And Roles with Cannabis Patients
By: Jennie Stormes, RN, BSN, MSN Student
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Nursing in a medical or recreational marijuana state can be challenging with the conflict in state and federal laws. People, young and old, will present to the emergency room, hospital, doctors office, home care, hospice, and so many other places, for medical care while using some form of cannabis. The use can be general wellness, recreation, and symptom control, cancer fighting, life-saving from some catastrophic disease or disorder. The bottom line is, they still need medical care and deserve medical care. What does the typical cannabis user get? It varies on their appearance, needs, and who is working at that moment of need. It should not be this way. As a professional nurse, you should be offering the same compassionate care, regardless of the choice of medication. After all, isn’t choice in one’s own care a patient right? If the patient doesn’t have the right to choose their own medications, medical care, or choices of recreation, then what does the patient bill of rights cover (NIH: US National Library of Medicine, 2017)? Exactly, the choice to take a medication with few side effects and a safer medical profile than almost every prescription and over the counter drug, is a right. As a Nurse, you need to support all the rights of the patient, including the choice of a controversial medication. The irony in a medical state, is that cannabis is considered medicine, yet has no official medicinal value. History can prove cannabis is a medicine with many medicinal uses (ProCon.org, 2017). The Federal Government has once done the following:
1. Classified cannabis as a medicine with medical purposes. 2. Allowed compassionate-use through a federal IND-FDA run program (now closed) which supplied cannabis cigarettes directly to patients. 3. Holds at least one US patent on cannabis use as a medicine (Patent No.6630507) 4. Has approved as a Schedule 3 drug synthetic forms of cannabis as a medicine, and is currently allowing investigational drugs and ongoing studies using cannabis-plant-based research in the United States (Lee, 2013).
Moral of the story: Cannabis is a medicine. Patients should be informed about cannabis as a medical option. Understandably, there are limitations on prescriptive authorities, ability to prescribe a dose, and to monitor cannabis. As a Nurse, we have to present all options and treatments to our patients and their families. They are the ones who decided if the treatment using cannabis is useful or not. They are the ones who will need to decide if they would like to explore this medical option, just like any other drug, surgical procedure, or medical test. The patient needs to be informed. Nurses should be able to administer the cannabis based medication if this is the patient’s choice. Doctors should be able to prescribe and direct a nurse to administer cannabis-based medicine, because it is safer and more effective than many medical treatments (ProCon.org, 2017). Many patients will just say no without considering cannabis as a treatment. That is ok since this is their right and their choice. What the nurse did when including cannabis as a treatment option is to educate and share knowledge and open a conversation. The conversation will lead to more conversations, and maybe someday, that will be an option they may be willing and ready to consider. The Nurse must be informed and educated about cannabis and the science behind the plant. Since there are currently no nursing school officially offering cannabis education, it is up to the professional nurse to seek out the knowledge and educate themselves about cannabis use and nursing. This does not mean a nurse needs to run to a corner and purchase a bud and smoke it. Although, it might help feed the Endocannabinoid System (eCS), improve memory, and help lower stress and anxiety (Lee, 2013).
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The Professional Nurse needs to understand and know: 1. All mammals have an eCS in which deficiency can lead to disease and disorder (ACNA, n.d.). 2. Endocannabinoid Deficiency- Lack of cannabinoids can make the other systems in the body to not function properly and for the person to become ill and seek medical care (Lee, 2013; Russo, 2008). This is the root cause of many diseases. Simply feeding and treating the eCS with cannabis from the plant, called phytocannabinoids, can improve symptoms. 3. Treatment does not mean the person will be high or unfunctional. It simply means that they will be treated, like any other treatment option prescribed by a physician, but it is not allowed by federal laws. 4. The presence and purpose of the endocannabinoids. An endocannabinoid is an endogenous cannabinoid made by the body and used, like the phytocannabinoids, at the same receptors (Lee, 2013; Russo, 2008). The most common endocannabinoids are anandamide and 2-AG and bind to the same receptors as the phytocannabinoids (Grotenhermen & Russo, 2008). The endocannabinoids have a role and function within the body and promote a sense of wellness or happiness. 5. The use of phytocannabinoids. These are the components contained in the cannabis plant that are medicine and treat so many different ailments, conditions, diseases, and symptoms. The cannabinoids attach to the CB1 and/or CB2 receptors within the body, comprised of the endocannabinoid system (Grotenhermen & Russo, 2008).
Combining these main points of knowledge will help the nurse with understanding cannabis as a medicine. The presence of the eCS and the use of both endocannabinoids and phytocannabinoids will be huge. The next step would be to understand the use and application of the medication to treat disease and disorder. How to use cannabis and methods of treatment other than just smoking a joint. Sadly, with research and knowledge being suppressed for over 80 years because of prohibition, this is not well known or documented like a traditional FDA approved drug readily available to make a patient sicker with side effects and other ailments (Lee, 2013).
â&#x20AC;&#x153;What needs to happen is that the nurse needs to be bold enough to recommend cannabis for any and all symptoms that could benefits from cannabis as a medication, regardless of the state, because the recommendation is in the best interest of the patient and their careâ&#x20AC;?. Nurse Jennie Stormes, RN, BSN Doctors, in states where cannabis is legal for use, should be able to continue with the existing care and nurses should be able to administer the cannabis-based medications when inpatient, long-term care, hospice care, and anywhere someone needs medical care.
How does a Nurse include Cannabis? The Nursing Process Simply by using the Nursing Process and including cannabis in the plan of care steps, commonly known as ADPIE: Assessment, Diagnosis, Plan, Implement, and Evaluate (ANA, 2017).
Assessment this steps includes collection of objective and subjective data about the patient (ANA, 2017). A nurse should always ask and inquire if there is any medical cannabis use? If the answer is yes, then inquire as to why? What symptoms? Is it working to relieve the symptoms? Is there any other benefit they notice from the cannabis use, like better sleep? Increased hunger and weight gain? Less nausea? Any unwanted side effects? How is the patient taking the cannabis: smoking, vape, tincture, oral, rectal, sublingual, topical, or another method? Diagnosis includes the analysis of the
data collected and creating nursing diagnosis to improve health outcomes for the patient (ANA, 2017). Where can the use of cannabis be included in the diagnosis to assist in the positive outcome? Neuroprotection? Antiinflammatory? Analgesic? And so many other known properties possible.
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Planning incorporates the data from
the assessment and the diagnoses to create a plan of care with priorities in care needed to achieve the goals, plan of care to improve medical outcomes, and interventions to increase the odds of a positive outcome (ANA, 2017). The nurse should consider each intervention and when cannabis would be the safest option with the fewest side effects, cannabis should be included and implemented. For ineffective airway exchange, the use of cannabis can effect vasodilation of the bronchioles and open the airways. With acute or chronic pain, Flow Chart Credit: Jennie Stormes, RN, BSN. All Rights Reserved. cannabis is an analgesic. Imbalanced nutrition can be alleviated with cannabis to stimulate appetite and halt It is important for the nurse to include the Endocannabinoid nausea and vomiting. The nursing plan should include safe cannabis System (eCS) in all steps of the nursing process. The patient options to compliment the endocannabinoid system to heal disease and deserves complete care, which addresses all body systems and address symptoms present. all sources of disease, along with all possible treatments, even
Implementation of the nursing plan would involve following
through with the plan and doing what is needed for the patient (ANA, 2017). Even if the plan of care includes the use of cannabis based medication in the treatment of the patient. Obviously in a hospital, smoking would not be an option, but there are other choices to deliver the medication and to achieve the intended effect. Topical application (salve or patch) to an area of pain could relieve pain or treat skin lesions of psoriasis. Tinctures can be administered sublingual, orally, via a gastronomy (GT) or jejunum (JT) tube, and even rectal dosing to treat seizures, muscle spasms, dystonia, and so many other symptoms managed by a nurse.
Evaluation of all interventions implemented is important to
determine if they are effective and did the health outcome improve or decline (ANA, 2017). The evaluation is a reassessment of the health situation by the nurse. When considering cannabis, determine if the cannabis based medication was effective. If yes, then repeat if necessary until no longer needed. If no, then consider a different delivery route, different dosing, different strain, different cannabinoids, different ratios, cannabis break, and many other options for cannabis-based medications. The Nursing Process should be repeated until the patient care is no longer necessary. Until that point, the nurse will repeat the assessment, diagnosis, planning, implementation, and evaluation to improve the health outcomes (ANA, 2017). Making adjustments along the way is important. Taking into consideration the need for adjustments in cannabinoids, dosing, or ratios is an important aspect of cannabis use as a medication, especially with chronic, long-term diseases. Sometimes a cannabis break or ‘holiday’ can be beneficial to let the cannabis become more effective with maximum benefits at the receptor sites. Use of micro-dosing can help many. The use of various strategies for patients can help manage disease and discomfort. There is so much to know about the science of cannabis.
the forbidden one: cannabis. Even in an illegal cannabis state, it is not illegal for a nurse to share knowledge and teach a patient about cannabis who could benefit from the many medicinal cannabis abilities.
References ACNA. (n.d.). Our mission. Retrieved from American Cannabis Nurses Association: https://cannabisnurses.org/ ANA. (2017). Nursing process. Retrieved from American Nurse Association: http:// www.nursingworld.org/EspeciallyForYou/What-is-Nursing/Tools-You-Need/ Thenursingprocess.html Grotenhermen, F., & Russo, E. (2008). Cannabis and cannabinoids: Pharmacology, toxicology, and therapeutic potential. New York, NY: Routledge. Lee, M. E. (2013). Smoke Signals: A social history of marijuana - medical, recreational and scientific. Scribner. NIH: US National Library of Medicine. (2017). Patient rights. Retrieved from Medline Plus: https://medlineplus.gov/patientrights.html ProCon.org. (2017). 60 Peer-reviewed studies on medical marijuana. Retrieved from The Leading Source For Pros & Cons of Controversial Issues: http:// medicalmarijuana.procon.org/ view.resource.php?resourceID=000884 ProCon.org. (2017). Historical timeline. Retrieved from ProCon.org the Leading Source for Pros & Cons of Controversial Issues: http://medicalmarijuana.procon.org/ view.timeline.php?timelineID=000026 Russo, E. B. (2008). Clinical endocannabinoid deficiency (CECD): Can this concept explain therapuetic benefits of cannabis in migraine, fibromyalgia, irritable bowel syndrome and other treatment resistent conditions? Neuroendocrinology Letters, 192-200.
Rx given to a patient in an ER in Denver Children’s Hospital 2017. (Permission from the person granted on FB when posted)
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~ Angela Brown
TBI and Cannabis: A Teenager’s Perspective By: Trey Brown (now 17 years old)
State of Minnesota
Background: Trey Brown was a normal thirteen-year old child that played community sports in the heart of Minnesota with his family. His entire life and health changed on April 25th, 2011 when a line drive baseball struck by an aluminum bat, imbedded into the left side of his head. “I have an inch and half whole in the left side of my brain- the learning center.” He was diagnosed with TBI (Total Brain Injury) which is a sudden injury from an external force that affects the functioning of the brain. It can be caused by a bump or blow to the head (closed head injury) or by an object penetrating the skull (called a penetrating injury). Some TBIs result in mild, temporary problems, but a more severe TBI can lead to serious physical and psychological symptoms, coma, and even death1,2,3,4. As a young teenager fighting for his life for solutions to his many ailments of TBI, Trey began to suffer with secondary conditions such as but not limited to Hypothalamic Storms, Seretonin Syndrome, and Thyroid Storms. Pharmaceuticals were used in a variety of forms and if Trey even missed a dose of levothyroxin it would throw him into a Thyroid Storm. TBI is no joke. He and his mother searched for non-conventional solutions as the current pharmaceuticals hindered his growth and PTSD and depression set in, a common condition of TBI sufferers. Medical cannabis was and is his solution yet due to a lack of program in his state of Minnesota he was forced to move to Colorado and become a Cannabis Refugee. He contributes his medicine - Cannabis - as the reason why he is here today. Now he shares his knowledge in hopes to help future teenagers and their families struggling on whether medical cannabis - as a treatment option - is right for them.
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What is it like being a Cannabis Refugee and the challenges you experienced? There have been many challenges moving to Colorado. My dad hindered the move because he didn’t want to leave his opiate dealers in Minnesota. We really had very little support here in Colorado to assist in getting us here. Jennie Storms, Sierra Riddle, and our private grower friends are who to thank. Without their open doors I would not have survived, literally. So Mom had to fight every step of the way to get me here. It took her two pain filled years, the realization she needed to make this move as a single mom, her massage business, friends and all that was familiar. We left behind my older brother, Delany, and my niece who is more like a sister; Kourtny, Del’s lady, and her daughter who have wormed their ways into our hearts. It has not been easy to be so far from home. However, through all that loss we have gained so very much. My dad is now clean, Mom made sure he would be around to realize everyone has worth if you just look. Now he can speak out about how my cannabis saved his life every time he tried to take it via opiates. My Mom met her new partner because of our struggles here. With him comes his knowledge and ability to grow amazing cannabis, his love and support, my now youngest brother and a sister, as well the promise of an amazing future.
Cannabis is quite controversial and there are many stigmas. Do your peers think you are just a stoner? I am more than just a stoner. I am a young man who enjoys the freedom of a clear mind and a body I have some control over- thanks to cannabis.
What routes of administration work best for you? I have been using a PAX Vaporizer since the beginning. It was my go to during ‘The Storms’ before it broke. I enjoy my Beta bong, various spoon pipes that I smoke flower out of. My Mom makes infused coconut oil in our Magical Butter Machine™ that I take on a regular schedule throughout the day. I enjoy making edibles, cause why not have fun with my meds?! Topicals that my mom makes come in handy after long days too. I consume Dabs, wax, whatever as long as it is from clean bud with clean ingredients. The above kinda explains I have a routine, but I know damn well how fast a Storm can come in or how hard an Overload hits. So I need to be prepared. I got an opportunity to try Ebbu’s isolated cannabinoid solution during an overload once. Hopefully we can have their products around here soon. It was the first time I had ever had control while in overload, that is epic. My body has been through so much. So often I was diagnosed with 'stuff' that was opposite then the real issue. My Mom pushed till we found answers.
Has cannabis hindered you from working and living a normal life?
My boss is cool with me medicating while I work. I can work and earn my own way in life because I have cannabis. My Stashlogixs travel bag (https://www.stashlogix.com/collections) helps me keep my meds organized and safe while out and about.
What are your favorite strains that work for you and your conditions? Favorite strains? The next one I smoke. I do believe someone famous dubbed that phrase. I do enjoy White Dog, Golden Goat, and currently the strains being grown by my mom’s partner, David Lippoldt, specifically for issues with brain injuries. He couldn't find strains that worked right after his TBI so he is creating them for us. I am grateful he started this journey, it has eased mine. Golden Goat: is a heavy hitting mind expanding sativa with a sweet and piney terpene profile and THC in the high 20s. https://www.leafly.com/products/details/calyx-garden-golden-goat White Dog/Chemdawg: is a hybrid (sativa/indica) that provides a relaxed, euphoric, happy, uplifted, and creative mood. Known for decreasing stress, pain, depression, lack of appetitie, and insomnia. https://www.leafly.com/hybrid/chemdawg I want to feel relief of swelling in my brain. I want to be clear headed, open to learning, and open to new experiences. I enjoy being able to relax and sleep. So whatever strain helps me to be the above average teen, bring it on! July/August 2017 41
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What is the best advice you can provide for TBI Sufferers? We figured out diet and nutrition is extremely important to the healing body.
Here are some very helpful tips for TBI sufferers that we discovered: Gluten is the devil, don’t touch it or anything that may resemble it. Processed soy is a pseudo hormone that will f@ck your world. Glutamate destroys already damaged areas, taking out more and more healthy cells as it floods your brain. That MSG (Monosodium glutamate) in your processed food is so not worth the self-harming Dr. Jekyll/Mr. Hide that happens when brain injury meets chemicals that cause it to swell and release floods of that glutamate and excess serotonin creating Serotonin Syndromes (SS). It often occurs when two medicines that affect the body's level of serotonin are taken together at the same time. The medicines cause too much serotonin to be released or to remain in the brain area. It took my mom awhile to figure the foods out. We have Jennie Stormes, RN, BSN and Mike Morse, both from Colorado, to thank for helping us weed through what hadn’t already been cleared out - The what to and what not to eat, How to pair foods so you can have some fun, and so on. For Example: If I want to eat cashews I better have a cup of green tea too so that I don’t rip another door off its hinges. Green Tea helps me chill out. Green tea contains the amino acid L-theanine, which is found almost exclusively in tea plants (Raj Juneja et al., 1999). L-theanine acts as a neurotransmitter in the brain, meaning that it sends signals to neurons. Several studies have shown that L-theanine appears to increase alpha-wave generation in the human brain, signalling a state of relaxation (Raj Juneja et al., 1999).
What is the most profound thing that you have learned about kids and cannabis before and after (change in perception)?
All I really knew before was that my grandpa used to grow and used it in his final days for comfort from the cancer that killed him. If the world had just allowed us our rights, I would have known him.
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I have learned that kids need cannabis, even the seemingly healthy ones. Who knew a CBD/THC gummy could help a guy pass his algebra test? Did you know that a cannabis suppository will ease pain, cramps, mood swings, etc - I bet there are a few young ladies that would enjoy sanity. Did you know that cannabis can help our teens by opening their minds, easing their anxiety, reducing all the messed up things that happen as we grow into ourselves? Dr. Komandis does, it’s worth your time to look into his work. (Minnesota’s Cannabis Summit 2016).
What advice do you give to other Teenagers and Parents who are considering medical cannabis? 1. Cannabis creates new life. The turmoil and all the negative attention my mom’s case caused - aside from the Cannabis - has greatly, positively impacted our lives. We are better people for walking through the Valley of the Shadow of Death. Through the hell fire that cannabis creates within uneducated people. It made us fight to rise above it, made us want to open eyes to the truth. A truth that must be told just right for it to be heard. 2. Do not believe everything you are told. There are many lies out there even if you think they are the truth, they may not be. Do your own research, look deep and far. Ask those who have come before, we have paved a way and it was so very hard, so let us help you. 3. Start Low and Go Slow. Low and Slow really is the way to go. Keep acidic juices and foods around - don’t let a possible bad trip ruin you for the wonders of cannabis. Acidic foods cut down THC in your fat cells to lower your “high” euphoric effects. You can also vape your flower at low temps to bring out more CBD to lower effects of THC. 4. The first person you talk to about your use should be someone who will fully support your journey. That person may not be in your circle. Thankfully there are many well educated advocates, nurses, doctors, scientists, and experts. In the state of Minnesota you can go to Sensible.MN for all your questions and concerns. 5. Do not be afraid!! Do not fear your neighbor’s views while your child lays suffering!
What impacts has cannabis made on you and your future? What are you doing now? Sensible Minnesota just had their first Summit. I had the privilege of speaking on the Patient Panel. This August 2017, I will be speaking at Seattle Washington’s HempFest. The more people that know Traumatic Brain Injuries are unlike any other creature when it comes to cannabis, the better.
Education is Power - a phrase handed down from
my Grandpa Elsner along with his desire and love of growing a plant that brought him a lot of fun in his youth and eased his pain at the end. Cannabis wasnâ&#x20AC;&#x2122;t allowed to save his life back then. So I thank all those who have made it so Cannabis could save mine. Right now I am making myself proud. I never thought I would get to go back to school and excel at it, attend prom, speak out and save lives, bust my butt digging trenches for an awesome boss, and I sure never thought I would ever get a drivers license. My Mom was told I was going to die. She didnâ&#x20AC;&#x2122;t listen, so why should I? This is my life, Mine to do as I see fit with. Regardless of what my birth certificate says, the government does not own my body. I have a right to consume a plant that gives me life.
Sensible Minessota: Founded in February 2015
Sources: 1. Centers for Disease Control and Prevention. (2012). How many people have TBI? Retrieved June 12, 2012, from http://www.cdc.gov/traumaticbraininjury/statistics.html[top] 2.
https://www.nichd.nih.gov/health/topics/tbi/conditioninfo/Pages/ default.aspx
3.
https://medlineplus.gov/traumaticbraininjury.html
4. http://www.traumaticbraininjury.com/understanding-tbi/whatis-traumatic-brain-injury/
Resources: 1.
https://en.wikipedia.org/wiki/Contact_sport
2.
http://patft.uspto.gov/netacgi/nph-Parser? Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=% 2Fnetahtml%2FPTO% 2Fsrchnum.htm&r=1&f=G&l=50&s1=6630507.PN.&OS =PN/663 0507&RS=PN/6630507
3.
https://www.google.com/patents/US6630507
4.
http://www.medstarsportsmedicine.org/research/whichyouth-sports-cause-the-most-concussions
5.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2140075/
6.
http://jamanetwork.com/journals/jamapediatrics/ fullarticle/2375128
7.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3865832/
8.
https://medlineplus.gov/ency/article/007272.htm
9.
http://www.health.state.mn.us/topics/cannabis/about/ update1016.pdf
Mission:
To educate the public on the uses, benefits, and relative safety of cannabis; to support persons harmed by prohibition; and to advocate for sensible policy changes. Sensible Minnesota is a 501(c)3 tax exempt non-profit organization working on sensible cannabis policy changes in Minnesota. We offer a number of different services for the public including assisting patients with accessing medical cannabis, working with communities harmed by prohibition, speaking to and engaging communities in discussion, and providing resources for outside agencies and organizations. We envision safer communities as a result of sensible policies through education and advocacy. https://sensible.mn
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chef herb has created some of his favorite recipes for his classic days of summer time fun. check out cookwithherb.com to see how he can help you learn to cook with, and make, thc oils and butter. AnD for More
Chef herb Cook WITH HE RB &
go to www.cookwithherb.com
Shrimp CoCkTail
If you are using frozen shrimp, the safest way to defrost them is in a bowl of ice water in the refrigerator. I like to buy tail-on, shell-on, deveined shrimp. Of course, use what you can find at the markets. INGREDIENTS For the shrimp: - 2 tablespoons Old Bay Seasoning - 1 teaspoon granulated garlic - 1/2 teaspoon chili powder - 1 teaspoon salt - 24 extra large tail-on raw shrimp (more if you are using smaller shrimp) For the cocktail sauce: - 1/2 cup chili sauce - 1 cup ketchup - ¼ cup THC olive oil - 1 tablespoon horseradish - 1 dash Worcestershire sauce Juice of 1/2 lemon - 1/2 teaspoon Tabasco - 1/2 clove garlic, finely minced 1 tablespoon cilantro, chopped * The chef specifically recommends Heinz chili sauce – it’s not very spicy and has a nice sweet taste. If you use other type of hot chili sauce, just start with a couple tablespoons first, then taste and adjust.
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PREP RATION 1. ToAprepare the cocktail sauce, mix all the cocktail sauce ingredients together in a medium bowl and refrigerate until ready to serve. 2. Have a large bowl of ice water ready and set near the sink. Add the Old Bay, lemon, granulated garlic, garlic, chili powder, and salt to an 8-quart pot of water. Bring to a boil. Add the shrimp to the pot and when the water returns to a boil, the shrimp should be done! The shrimp should be bright pink. 3. Immediately drain and place the shrimp into the ice bath to cool for 2 minutes. Peel the shrimp (leaving the tail-on.) Drain and serve with the cocktail sauce.
TradiTional CeviChe INGREDIENTS - 2 lbs of firm, fresh red snapper fillets (or other firm-fleshed fish), cut into 1/2 inch pieces, completely deboned - 1/2 cup of fresh squeezed lime juice - 1/2 cup of fresh squeezed lemon juice - ¼ cup THC olive oil - 1/2 red onion, finely diced - 1 cup of chopped fresh seeded tomatoes - 1 serrano chili, seeded and finely diced - 2 teaspoons of salt - Dash of ground oregano - Dash of Tabasco or a light pinch of cayenne pepper Cilantro - Avocado -Tortillas or tortilla chips PREP RATION 1. In A a non-reactive casserole dish, place the fish, the onion, the tomatoes, the chili, the salt, the Tabasco, and the oregano. Cover with THC olive oil, lime and lemon juice. Let it sit covered in the refrigerator for about an hour, stir occasionally, making sure all the fish gets exposed to the acidic lime and lemon juices. Let sit for several hours, giving time for the flavors to blend.
2. During the marinating process the fish will change from pinkish grey and translucent to whiter in color and opaque. 3. Serve with the chopped cilantro and the slices of avocado with heated tortillas for ceviche tacos or with tortilla chips
Crab ClawS wiTh a ClaSSiC Cajun romulade INGREDIENTS - 1 qt Mayonnaise; (not salad 4 Eggs; hard boiled - 3 tb Creole or dark mustard - ½ cup THC olive oil - 4 tb White vinegar - 4 tb Fresh parsley; chopped 2 tb Worcestershire sauce - 3 tb Horseradish sauce - 4 Cloves garlic; chopped Salt and pepper; to taste
mix, cover, and refrigerate until chilled, at least 30 minutes. Just before serving, stir in the cilantro and sprinkle with chopped peanuts.
momS piCniC ChiCken Salad INGREDIENTS - 3 peaches - 1/4 Cup THC olive oil - 2 tablespoons balsamic vinegar 1 lb cooked chicken - 2/3 cup hazelnuts - 1/2 cup cilantro - salt - pepper - 8 cups spinach leaves PREP RATION A the peaches: this is easier if you blanch them first by putting 1. Peel them in a pan of simmering water for a minute. (If you use nectarines, it is unnecessary to peel them).
PREPARATION Whirl all the ingredients in blender or processor; add salt and pepper to taste. Refrigerate 12 hours before using. Will keep several weeks in refrigerator. This sauce is basically for use with Crab Claws, as a cocktail, but can be used for many other things.
2. In a medium salad bowl, whisk together the THC olive oil and vinegar. Add the chicken, peaches, hazelnuts and cilantro. Season with salt and pepper and toss to coat. Add the spinach leaves and toss again. Taste and adjust the seasoning. Serve immediately, or refrigerate for up to a day; it gets better as it sits. Remove from the fridge half an hour before eating.
aSian TomaTo CuCumber and onion Salad
pineapple and jiCama Salad
INGREDIENTS - 1 large cucumber - 2 tomatoes, seeded and cut into wedges ¼ red onion, thinly sliced - ¼ THC olive oil - 1/4 cup rice vinegar - 2 tablespoons lime juice - 1 teaspoon white sugar, or to taste - 3 tablespoons chopped fresh cilantro - 3 tablespoons chopped peanuts (optional) PREPARATION Peel the cucumber in stripes lengthwise with a vegetable peeler, alternating skinned stripes with peel for a decorative effect. Slice the cucumber in half lengthwise, and then thinly slice. Place the cucumber in a salad bowl with the tomato and red onion, and mix together. Pour the rice vinegar, THC olive oil, and limejuice into a separate bowl, and stir in the sugar until dissolved. Pour the dressing over the salad;
INGREDIENTS - 1 fresh pineapple - 1/2 green bell pepper, cut into thin strips 1/2 red bell pepper, cut into thin strips - 3/4 cup finely diced jicama - 2 scallions, thinly sliced - 1/2 teaspoon salt - 1/4 teaspoon pepper - ¼ cup THC vegetable oil - 2 tablespoons rice vinegar PREP RATION A pineapple and cut away core. Cut into 1-inch pieces. Place in a 1. Peel large bowl. 2. Add green and red pepper strips, jicama and scallions. 3. In a small jar, shake together salt, pepper, vinegar and THC vegetable oil. Add to salad and toss to coat. 4. Serve chilled or at room temperature.
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Smoked Salmon paSTa Salad INGREDIENTS - 1/2 c. dry white wine - 1/4 c. THC olive oil - 1 tbsp. Dijon mustard - 1 tsp. fresh lemon juice - 8 oz. fusilli (corkscrew) pasta - 1 head radicchio, torn into bite sized pieces - 3/4 lb. smoked salmon, cut julienne - 1/4 c. raspberry vinegar - 2 eggs - 1 shallot, minced - Salt and pepper - 2 heads curly endive, torn into bite sized pieces - 10 Italian olives, pitted - 1 tbsp. snipped fresh chives PREPARATION Mix wine, vinegar, THC olive oil, eggs, mustard, shallot and lemon juice in blender until smooth. Season with salt and pepper. Cook pasta in large pot of boiling salted water until just tender, stirring occasionally to prevent sticking. Drain in colander. Cool completely under running water. Drain. Mix pasta with endive and radicchio in large bowl. Add tomatoes, olives and dressing to taste; toss well. Divide salad among plates. Sprinkle with salmon and chives. 6 servings
exTreme mediCaTed blondieS INGREDIENTS - 4 cups all-purpose flour - 2 teaspoons baking powder - 1-1/2 teaspoons salt - 1-1/3 cups (2-1/3 sticks) unsalted THC butter at room temperature - 3 cups packed light-brown sugar - 4 teaspoons vanilla - 4 eggs - 2-1/2 cups coarsely chopped walnuts - 1-1/4 cups white chocolate chips PREP RATION A oven to 350 degrees F. Line two 9 x 9 x 2-inch square baking 1. Heat pans with foil, extending over two sides. 2. Mix together flour, baking powder and salt in a bowl. Beat THC
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butter, sugar, and vanilla in large bowl until creamy. Beat in eggs, one at a time. On low, beat in flour mixture. Stir in 2 cups walnuts and 1 cup chips. Divide batter into pans. Divide remaining nuts in half; sprinkle over each pan. 3. Bake in 350 degrees F oven 40 minutes, until toothpick tests clean. Remove pans from oven. Sprinkle tops with remaining chips; lightly press down chips with spatula to melt slightly. Cool in pan on rack. Cut in squares
blueberry CupCakeS INGREDIENTS - 1 1/4 cups flour - 2 cup sugar - 1 3/4 teaspoons baking powder - 1/4 teaspoon salt - 1/3 cup THC butter - 1 egg, beaten - 3/4 cup milk - 1/2 teaspoon vanilla - 2/3 cup blueberries - 1/3 cup chopped unblanched almonds, toasted PREPARATION Sift dry ingredients together to mix well. Cut in the THC butter until mixture resembles coarse crumbs. Whisk egg vigorously to incorporate air and make the eggs light. Stir in egg, milk and vanilla and combine thoroughly. Add to dry mixture and stir together (some lumps should remain) and add the blueberries. Fill well greased muffin tins with batter until two thirds full. Bake in a preheated 350°F oven for 20 minutes or until done. Makes 18 large muffins.
KeyNote Speakers Cannabis Nurses Network Conference www.CNNC2017.com Empowering Nurses through Education, Opportunity, Recognition, and Advocacy OCTOBER 5-7th, 2017 | UNLV LAS VEGAS, NV
3-Day Schedule
Oct 5th Cannabis Education for Nurses (*5.33 CEUs) With states across the nation recently implementing cannabis recreational laws and many states having medical cannabis the need for cannabis education is more important for Nurses, Health Care Providers and individuals than ever before. This course goes in depth covering the history of cannabis from 5,000 BC to present, legalities nationally as well as state specifics with a focus on Nevada, patient and nursing rights and responsibilities, basic understanding of the Endocannabinoid System (eCS) and plant components, cannabinoid therapeutics including but not limited to: routes of administration, dosing, testing, metabolism, side effects and where cannabis is headed in the future. Nurses will receive: *5.33 CEUs including 2.0 Advanced Practice Nursing (APRN) Pharmacokinetics all others will receive Certificate of Completion. Open to All. * Bonus: Cannabis Education for Nurses Workbook included with purchase of course.
Oct 6th eCS Connections Workshop & Interactive Sports Panel
Ken Sobel, Esq.
Heather Manus, RN
Julie Monteiro, RN, BSK
Jennie Stormes, RN, BSN
Marcie Cooper, MSN, RN, AHN-BC
Lisa Buchanan, RN, OCN
eCS Connections Workshop is a hands-on experience where attendees will feed and learn of the eCS function and purpose; explore the Foundation of Eastern Medicine with directed Acupuncture, and a Tune your Senses with Terpenes making a personal terpene profile to take home. The Interactive Sports Book Panel includes but not limited to: Marvin Washington (Prior NFL- Giants/Broncos), Boo Williams (Prior NFL Saints), Steve Cantwell (Prior MMA Fighter now NV Grower), and more will provide you the opportunity to interact directly with Canna-Sport Heroes as they tell their stories, share their knowledge, and how they strive hard to have cannabis therapies accepted in professional and youth sports. Interactive Sports Book Autographs segment a first of its kind and a collector’s item. Swag bags included and are exclusive to this event!
Oct 7th CNM 2-Year Anniversary & Leaders of Nursing Awards To round out the weekend, come join us as we celebrate the 2-Year Anniversary of Cannabis Nurses Magazine and ‘Leaders of Nursing’ Awards Ceremony, to thank and honor, all the Nurses and Professionals who have contributed to the success of the publication, by being the first line of Canna-Warriors who are creating change around the world! This is a free event and open to all. Registration required.
For more information visit: www.CNNC2017.com
Affiliate Sponsors:
For Educational Purposes Only. A Non-Consumption Event.
www.CNNC2017.com
www.CannabisNursesMagazine.com
www.NatureNurseHealth.com
CANNABIS AND CROHN'S DISEASE By: Wendy Turner (Mother of Coltyn Turner)
State of Colorado
"I'd rather be illegally alive than legally dead." ~ Coltyn Turner Crohn's disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people.
Sporting events are still possible with IBD.
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Coltyn Turner:
Obtaining a Diagnosis:
On June 3, 2011, Coltyn Turner drowned in a lake while attending a Boy Scout Camp in his home state of Illinois. He was luckily saved by his brother, Skyler, and 3 other Boy scouts. He survived the incident, but the event triggered young Coltyn’s body to develop a severe autoimmune disorder known as Crohn’s Disease. We had no idea what Crohn's was. Coltyn started taking asacol, even though we weren't 100% sure it was Crohn's and was sent home, to be seen back at the doctor’s office 3 months later. So we started doing our research on Crohn's to see what we were up against. Little did we know, that day would set us on a path of heartbreak, soul searching, anger and pure determination.
Shortly after his drowning Coltyn got sick with a lot of stomach pain, frequent bathroom visits, fatigue and vomiting. So we, of course, took him to the doctor. She ran a ton of tests and it was determined that he had a bacterial infection from the lake water he ingested when he drown. But a few of his tests came out abnormal. His Complete Blood Count (CBC) showed significant anemia, his C-reactive protein (CRP) and Erythrocyte Sedimentation Rate or SED rate (ESR) were significantly elevated indicating the possibility of inflammation and his Vitamin B-12 was low which can be an indication that the small intestines aren’t absorbing nutrients properly. The pediatrician suggested we see a Pediatric Gastroenterologist (GI). Between seeing the Pediatrician and getting to the GI, Coltyn quickly declined and was experiencing more pain and now bloody stools. So a visit to the ER was inevitable.
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It was quickly determined that Coltyn needed many more tests including ultrasounds, EGD’s, Colonoscopies, X-rays, MRI’s and more blood tests. After a couple overnight stays in the hospital, all these tests performed, we finally got a partial diagnosis of Crohn’s Disease, a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the mouth to the anus (www.crohnscolitisfoundation.org). The GI said he was about 70 percent sure it was Crohn’s. Coltyn was given Asacol, similar to aspirin, and we were told to make an appointment to follow up in 6 months. WHAT? The physician was 70 percent sure? This was not good enough. So we headed to the Mayo Clinic. The Mayo Clinic ran many of the same tests but there was one, a really important one, that they did very first. A Carbohydrate Breath Test (www.cdd.com.au) Carbohydrate malabsorption is the inability to absorb certain sugars like fructose, lactose, sucrose and sorbitol in the gastrointestinal tract. Coltyn’s carbohydrate test was the highest in fructose, it was the highest the Mayo Clinic had recorded at that time. An overwhelming amount of patients who suffer from IBD also suffer from a sugar malabsorption or intolerance.
on ntiona
at
nts:
After all the crazy tests the poor kid was put through AGAIN, we finally got a 100 percent diagnosis of Crohn’s Disease. And then the fight began. The medicines thrown at him had some of the scariest black box warnings I’d ever read. We will start with Remicade (Infliximab) because that’s when we realized Coltyn’s journey wasn’t going to be an easy one. Remicade is a TNFa blocker (tumor necrosis factor alpha) or what we laymen call a “biological”. It’s commonly used in auto-immune disorders. It’s administered like Chemotherapy, in an IV infusion. Coltyn’s first infusion of Remicade took 6 hours and 4 hours after the infusion was finished, he was in severe abdominal pain and back in the ER. His doctor thought he perforated his colon while doing a colonoscopy but after further examination, that wasn’t it. So he was given Tylenol 3 with codeine for the pain and sent home. Finally after 4 more infusions within a 9 week period, lots of pain meds and Benadryl, blood work showed he was making antibodies to the medicine, he was showing signs of Rheumatoid Arthritis (RA) and Lupus which is a side effect from Remicade. Shortly after stopping the Remicade, Coltyn was officially diagnosed with RA and Lupus and serum sickness (www.remicade.com). We tried Methotrexate next and with only one shot Coltyn’s face swelled and he was having profuse nose bleeds. A few meds were given in between, but the next significant medication Coltyn was given was Humira (adalimumab) which I was completely against. Humira (www.humira.com) has a similar black box warning as Remicade. They are in the same family of TNFa blocker of biological medicines. Remicade is made with mouse DNA and Humira with human DNA. Coltyn actually responded well to Humira for quite a while. The damage it did to Coltyn mentally was heart wrenching. Humira is administered by injection in the thighs or stomach and Coltyn describes it like being stung by 100 wasps all at the same time. We used numbing medications and rubbed ice on the shot area to try to make it better but with no avail. He’d scream so loud that his brother and sister would go upstairs before he got his shot, put headphones on to drown out his screams and just hold each other, while Tommy and I were holding Coltyn down because he’d fight us. Now getting shots or even a wasp or bee flying around triggers a mental breakdown. After about 6 months of Humira the inevitable happened. Coltyn started getting sick again. He was never in remission with any of these medications. He was always in the bathroom either suffering from diarrhea and constipation or vomiting. It just never stopped. He went to Camp Oasis for a week, a camp for kids suffering from IBD and not one of them had an immune system. Well, who do you think comes home sicker than he left? Yep. Coltyn. The lymph nodes in his neck were about the size of golf balls. So off to the ER we go. July/August 2017 49
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The first diagnosis was strep. The next was pneumonia. The one after that, tuberculosis (TB). That was a nightmare. (www.Coltynscrue.org). After many months of searching for the right tuberculosis type and a botched surgery, Coltyn didn’t have TB after all. Now they thought it was Hepatosplenic T-cell Lymphoma. Quoting the official Humira website, “This type of cancer often results in death.” WHAT?! OK… Enough was enough. We were determined to find an alternative to these nasty pharmaceuticals that were threatening the life of my kid. By this time, Coltyn had been off Humira for 6 months and he was deteriorating fast. Coltyn was dying, he was grossly underweight and so weak he was in a wheelchair; he spent most of his days in the bathroom and nights sleeping there. He did his homework in the bathroom! He looked like a vampire. His hair was getting thinner and the circles around his eyes were getting darker. So I took matters into my own hands and started researching “alternative” medicines, when I came across a study from Israel (www.Coltynscrue.org) that stated, “…a short course (8 weeks) of THC-rich cannabis produced significant clinical, steroid-free benefits to 10 of 11 patients with active Crohn’s disease, compared with placebo, without side effects.” Wait… WHAT? Marijuana? Marijuana can be used to treat Crohn’s? WITHOUT SIDE EFFECTS??? Coltyn is going to Colorado!
Adding Cannabis as a Treatment Option:
On March 4, 2014, just 4 days after Coltyn’s 14th birthday, Tommy drove Coltyn to Colorado to search for a miracle. We became Cannabis Refugees. We were so lost. Not only did we know nothing about cannabis, Coltyn was so frail that we didn’t know if he could make the trip without a hospital visit or even at all. But it was our only hope. And we had to try. Because the worst thing that could happen is that it wouldn’t work. So what if he got high! He was high on Morphine and OxyCotin all the time. Was I scared that his brain or liver would be damaged? Not any more than on pharmaceuticals!
Supply:
It took 3 weeks to find a consistent supply of cannabis oil. Until then, Tommy would go to a recreational dispensary, buy strains of just flower products (Cannatonic, Sour Tsunami, AC/DC or Harlequin) and made brownies. Just on the brownies, Coltyn’s life blossomed. He was growing and gaining weight. He was out of the wheel chair. But it wasn’t easy. There was no consistent supply of products nor was it tested appropriately. In Colorado, Medical Cannabis is NOT tested where Recreational Cannabis IS tested. It should all be tested yet the laws have not caught up to the science.
Dosing: No one we were in contact with knew how to dose Coltyn. All the people who used cannabis for Crohn’s were adults who smoked. We quickly called the Marijuana Enforcement Division in Colorado to ask if they knew of any other pediatric patients using cannabis for Crohn’s and if so could they give me the name of the recommending Doctor. But Coltyn was the first and at that time, the only. So the trial and error began. I spent hours in the internet talking to other adults who used cannabis and always got the same answer, “start low and go slow” and don’t get him high. So we started with a 20:1 CBD to THC ratio and quickly realized he needed more THC, so we gave him edibles because we knew infused brownies worked and slowly integrated the THC into the oils until we found that 15 milligrams of CBD and 15 milligrams of THC (1:1 ratio), 4 times a day in a vegan capsule, was his magic ratio.
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Results with Cannabis Use: Seven months into Coltyn’s Cannabis treatments, he had a colonoscopy done. He was in complete remission. No active Crohn’s disease. It’s been over 3 years. Of healthy, worriless teenage years. Coltyn is back to normal. Normal is SO GOOD! We continue to learn about cannabis and share other stories of kids using cannabis for Crohn’s with the same crazy results as Coltyn. Remission!
Coltyn Now: Coltyn travels the country spreading awareness and educating people about the benefits of cannabis for Crohn’s disease, RA and Lupus. He recently traveled to Washington D.C. to talk to federal legislators about his story and encourage them to vote for beneficial cannabis reform. He was also part of a published study on Crohn’s Disease and Cannabis that was done in Colorado. Today, because of our choice of incorporating cannabis into his healthcare plan, Coltyn is healthy using cannabinoid therapeutics daily, actively working toward his eagle scout, hiking & laughing with his siblings, and speaks on a National level regarding cannabis policy and patients’ rights. Leaving our home state and moving 14 hours away hasn’t been the easiest on our family. Being away from the people Tommy and I grew up with, our family and friends, our gymnastics school and the small town safety of “home” is hard. But Tommy, Skyler, Ryleigh and I would do it all over again in a nanosecond if it meant that Coltyn would be healthy. Cannabis saved Coltyn’s life.
Resources: https://www.ncbi.nlm.nih.gov/pubmed/23648372
www.crohnscolitisfoundation.org
https://www.ima.org.il/filesupload/imaj/0/39/19985.pdf
www.Coltynscrue.org
http://www.tikun-olam.co.il/files/users/cannabis%20for%20CD%20-%20tikun%20olam.pdf
http://www.cghjournal.org
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2976865/
www.remicade.com
https://www.ncbi.nlm.nih.gov/pubmed/21795981
www.humira.com
https://www.ncbi.nlm.nih.gov/pubmed/8759664 https://www.ncbi.nlm.nih.gov/pubmed/23648372 http://www.karger.com/Article/FullText/356512 http://en.wikipedia.org/wiki/Crohn http://www.foynv.com/mmj-for-crohns-disease http://www.timesofisrael.com/in-israel-booming-medical-marijuana-looks-to-conquer-new-highs/ https://unitedpatientsgroup.com/blog/2015/01/13/a-cannabis-patients-guide-to-crohns-disease-by-crohnspatient-daniel-towns
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State of Oregon Photo Source: www.bravemykayla.com
Brave Mykayla
A BRAVE YOUNG GIRL WITH A UNIQUE & INSPIRING PATH THROUGH CHILDHOOD LEUKEMIA “We feel that any critically ill child deserves to have a quality of life equal to their peers or as close to it as possible. Children with Cancer, epilepsy, mitochondrial diseases; Autistic children and many other conditions deserve the chance to feel the whole body benefits of Cannabis. If someone can accept giving their child dangerous pharmaceutical medications every single day; medicine that has many unwanted side effects and addictive properties, then why is it not just as acceptable to start with Cannabis before progressing on to the harsher medicine? Why should this medicine not be available to a child? I have yet to hear a reasonable answer as to why it shouldn’t.” ~ Erin Purchase (Mother of Mykayla) Mykayla has T-cell Acute Lymphoblastic Leukemia This is a very rare and aggressive form of childhood leukemia; it accounts for 15-18% of childhood leukemia cases. Leukemia is cancer of the blood and bone marrow. Mykayla’s DNA was altered someway and it caused her bone marrow to start producing immature/leukemic white blood cells. These immature white blood cells are known as “lymphoblasts”. Lymphoblasts never die like a normal cell so they build up and accumulate in the chest area causing a mass (this is specific to T-cell phenotype).
Mykayla fell ill in May of 2012. She had flu like symptoms such as body aches, fevers, fatigue, cough, and runny nose. She was evaluated by an urgent care office and diagnosed with strep throat. They prescribed antibiotics but she did not get better. She soon developed a red rash that covered her ankles. Her bruises that covered her body were alarming to us… as she was too tired to play outside where she normally got bruises like this. Her tummy began to hurt badly and we took her to her pediatrician. He wanted us to remove dairy from her diet… to see if that solved the issues we were having, but it continued to get worse.
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She began sweating during the night, so badly that it would soak through her sheets into her mattress. Her breath was shallow… and her skin was pale cool to the touch. Her heart beat was funny, we couldn’t pin-point what exactly was different but the way her pulse looked was different. We feared that we would lose her if they did not find out what was wrong. On Friday, July 13th 2012 we took Mykayla back to the pediatrician. While checking for pneumonia they discovered a basketball sized mass (of lymphoblasts) in her chest. We were sent to Portland, Oregon where the nearest children’s hospital is and the very next day she underwent spinal taps and bone marrow biopsies and was subsequently diagnosed with Leukemia. Mykayla’s mass was so large that she was not able to be sedated for risk of death from the pressure on her esophagus and heart. Some of the valves that drain fluid from around your heart were blocked by the mass causing her pericardial effusion (fluid around the heart). Mykayla spent 3 days in the Intensive care unit and had to undergo an entire surgery to place a PICC line with no anesthetic or pain relief at all due to the risk it posed on her condition.
Leukemia is the most common form of childhood cancer. In the United States of America there are only TWO approved treatments for cancer… radiation and chemotherapy. Both are extremely toxic to the human body. When you are an adult you have the choice to use these two options or refuse and treat yourself however you want. When you are a child with cancer your parents do not have the option to refuse the approved way without facing legal repercussions that could include losing custody of the child. Also I feel that conventional medicine has a very important place in this world. I feel that there is a balance between conventional medicine and natural medicine. Speaking in terms of the average American family… this balance has been lost! Our family strives to create this balance for Mykayla, and providing her with the best possible chance of living a normal and healthy long life. With these thoughts in mind I will explain Mykayla’s treatment in further detail.
We have chosen the very basic chemotherapy protocol for childhood leukemia available to satisfy the “approved” & required treatment. This protocol is used to treat low risk leukemia patients (Mykayla is technically intermediate risk). It is a 3-5 chemotherapy drug and steroid combination that is done in 5 rounds lasting 2.5-3 years. The first 4 rounds are very intense and last for 6-8 months. The last round is called “maintenance”, it is done mainly from home and is far less damaging then the first 4 rounds. Mykayla began maintenance chemotherapy in February of 2013. Mykayla began chemotherapy on July 16th, 2012 (she began steroid treatment on July 14th, 2012). Mykayla’s Lymphoblast level was monitored daily for the first 8 days and weekly or twice weekly thereafter. Her lymphoblast level would go down after receiving chemotherapy but a few days after it would be back up and sometimes higher than before chemotherapy. The doctors were concerned. They spoke to us about the possibility of Mykayla having a bone marrow transplant due to the leukemia not going into remission with the chemotherapy. 95% of children with leukemia go into remission during the first 30 days of chemotherapy… the majority of them go into remission just a few days after receiving chemotherapy for the first time.
between the different cancer research groups our family felt 100% confident in denying cranial radiation for Mykayla as she is in remission (it was for prophylactic/preventative reasons that it was recommended) and she has natural treatment methods that protect her from cancer and relapse.
We as parents feel that the balance between natural medicine and conventional medicine has been lost. We had a plan from the very beginning to combat Mykayla’s cancer and chemotherapy naturally and that was to use cannabis in the form of very concentrated and potent cannabis oil, raw cannabis juice, and cannabis cooked into food. Cannabis has been known to kill cancer, protect the body from the damage of chemotherapy, relieve pain and nausea, and it is a neuroprotectant and antioxidant1,2,3,4. In order to use this form of treatment Mykayla had to get a recommendation from another physician and a state medical marijuana license. This took us 10 days to complete. Mykayla began cannabis therapy on July 24th, 2012. Instantly she was able to eat again. That was the first benefit that we noticed. She was happier, she smiled and laughed constantly. We loved it! One week after we began the cannabis oil treatment, Mykayla’s physicians notified us that her leukemia had vanished from her bone marrow and blood! She was in remission. Never again will I fear cancer. We found the answer! Mykayla continued the medical cannabis treatment plan and has never used any pain relievers (not even Tylenol) and has only had to take anti-nausea medication a few times.
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Cannabis Therapy Does Not Have To Be A Last Resort. Cannabis Therapy Should Be A Starting Point. Aspects of our lives that play a role in Mykaylaâ&#x20AC;&#x2122;s Treatment: Diet is medicine. Cancer thrives in an acidic environment and is fed by sugar. We try our best to create a diet for Mykayla that is
healthy, vegetarian (vegan if she will tolerate), organic, with no artificial additives, preservatives, or dyes. We also give her tons of alkali water. Although from time to time Mykayla just like any other kid slips on her dietâ&#x20AC;Ś she is NEVER allowed things such as soda pops and high fructose corn syrup.
Supplements work wonders. Some important supplements that we have found helpful in the fight against cancer and
chemotherapy are: Vitamin C, Green Tea extract, Milk Thistle, Beta Carotene, coconut oil, vitamin D, essiac tea, COQ10, selenium, omega 3, garlic, cannabis, and tons of fruits and vegetables.
Positivity. Having a positive attitude and providing your child with a happy, bright, and loving home provides a better outside
environment to fight cancer in. I believe strongly that the love and happiness that our family values dearly has to do with the success that we have seen Mykayla have while battling leukemia. A positive support system is crucial to the healing process.
Facts about Cannabis:
1. All strains possess their own benefits, no one strain is superior to another, they are all beneficial. 2. Blending strains gives you a broad spectrum cannabis oil with a wide variety of positive benefits. 3. When You are treating cancer with cannabis oil, you need all cannabinoids, not just THC or CBD. 4. Besides Cannabis oil, this medicine has many names: Full Extract Cannabi oil (FECO), Rick Simpson Oil (RSO), Whole Plant Extract are the most common.
Brave Mykayla Family Update- June 2017 This month marks two and a half years of treatment for Mykayla. At one point I never imagined that life could be "normal" again after cancer plagued her body almost 5 years ago. Mykayla transitioned to 6-month check-ups with oncology in November 2016 and that was exciting because "cancer checks" have been a part of our life every month or every-other month since 2012. Mykayla is extremely healthy these days, probably healthier than she was prior to her cancer diagnosis! She is 12 years old and finished 5th grade, she is excelling in school and her mild cognitive delays (chemotherapy related) are diminishing the longer she goes without chemotherapy. We have about 2 months until she hits 5 years off treatment where her risk of relapse is virtually non-existent. Mykayla's oncologists informed me that her risk of a secondary cancer is less than the statistics due to our choice in replacing brain radiation and highdose chemotherapy with cannabis oil. Each day I am thankful for life and good health. Mykayla is participating in an after-school choir program along with her 2nd year in dance. This year she transitioned from "hip-hop" to "Jazz" and it seems as if she is loving the change. She is on a competition/traveling team and had a couple of successful competitions in the beginning of 2017.
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Six Reasons Medical Cannabis should be allowed for Children: 1. 2. 3. 4. 5. 6.
Low Toxicity Mood Stabilizer/Enhancer Appetite Stimulant & Nausea Relief Non-Opioid Pain Management Anti-Neoplastic Agent Seizure Management/Cessation
Source: http://www.bravemykayla.com
Mykayla's little sister Ryleigh started kindergarten last year and is excited to be learning and around other kids. Mykayla is the best big sister to her and always helps her with learning to read and counting to 100. I remember when Ryleigh was 1 and Kayla was frail and sick from the chemo she would pack her around and I begged her to stop because Ryleigh was "getting too big". Mykayla still packs Ryleigh around... she has never stopped. Sisterly LOVE right there. Our family still advocates for cannabis medicine. We devote our lives to making this treatment available to all children regardless of their zip code. I started college again after a 7 year break. I am studying Complimentary Alternative Medicine and once completed will be able to certify as a Master Herbalist and a Holistic Nutritionist. I feel that holistic medicine and a healthy whole food diet has a lot to do with Mykayla's survival and her good health while enduring cancer treatments. Once my education is complete I will be focusing on providing my knowledge base to families with children fighting cancer, so they too can have a more successful recovery. We want to say thank you again for the endless support we received during the hardest most trying time of our life. Without our support system this journey would not have been possible. Thank you for loving on my daughter and sending her all the positive vibes she needed to kick cancers ass with cannabis!
Photo Sources: www.bravemykayla.com
Resources 1.
https://www.ncbi.nlm.nih.gov/pubmed/10863546
2.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC20965/
3.
https://www.sciencedaily.com/releases/2013/05/130530132531.htm
4.
Miriam Fishbein, Sahar Gov, Fadi Assaf, Mikhal Gafni, Ora Keren, Yosef
5.
http://patft.uspto.gov/netacgi/nph-Parser? Sect2=PTO1&Sect2=HITOFF&p=1&u=/netahtml/PTO/searchbool.html&r=1&f=G&l=50&d=PALL&RefSrch=yes&Query=PN/6630507
6.
https://www.BraveMykayla.com
7.
https://www.clf4kids.org
8.
http://cannadad.blogspot.com
9.
http://www.bloodjournal.org/content/105/3/1214.long?sso-checked=true
10.
http://constancetherapeutics.com/knowledge-center/cannabis-oil-andleukemia.html
11.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901602/
12.
https://www.ncbi.nlm.nih.gov/pubmed/16466429
Sarne. Long-term behavioral and biochemical effects of an ultra-low dose of Î&#x201D;9tetrahydrocannabinol (THC): neuroprotection and ERK signaling. Experimental Brain Research, 2012; 221 (4): 437 DOI: 10.1007/s00221-012-3186-5
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Cannabis and pregnancy:
Maternal child health implications during a period of drug policy liberalization☆ Katrina Mark a, M i s h k a T e r p l a n b a Department of Obstetrics, Gynecology and Reproductive Sciences, University of Maryland, Baltimore, MD, United States b Department of Obstetrics and Gynecology and Psychiatry, Virginia Commonwealth University, Richmond, VA, United States
ABSTRACT Cannabis use is common and increasing among women in the United States. State policies are changing with a movement towards decriminalization and legalization. We explore the implications of cannabis liberalization for maternal and child health. Most women who use cannabis quit or cut back during pregnancy. Although women are concerned about the possible health effects of cannabis, providers do a poor job of counseling. There is a theoretical potential for cannabis to interfere with neurodevelopment, however human data have not identified any longterm or long lasting meaningful differences between children exposed in utero to cannabis and those not. Scientifically accurate dissemination of cannabis outcomes data is necessary. Risks should be neither overstated nor minimized, and the legal status of a substance should not be equated with safety. Decreasing or stopping use of all recreational drugs should be encouraged during pregnancy. Providers must recognize that even in environments where cannabis is legal, pregnant women may end up involved with Child Protective Services. In states where substance use is considered child abuse this may be especially catastrophic. Above all, care for pregnant women who use cannabis should be non-punitive and grounded in respect for patient autonomy.
1. Introduction
2. Background
The medicinal use of cannabis for ailments of the female reproductive tract has been recorded as early as 2737 BCE and has been used for treatment of migraines, menstrual cramps, labor pains and even induction of labor (Russo et al., 2002). Cannabis was a common ingredient in (so-called) “patent medicines” marketed specifically to women from the 19th into the early 20th century. Concern for cannabis-related social ills led to its criminalization in 1937 just a few years after the prohibition on alcohol was revoked. Medical literature consequentially shifted to focus on potential harms of use including during pregnancy and postpartum.
Cannabis is a commonly used substance with 9.5% of reproductive aged women reporting past month use (SAMHSA, 2015). Use has increased over the past decade among both pregnant and non-pregnant reproductive-aged women and is most prevalent in women aged 18–25 (Brown et al., 2017). Pregnant women report less cannabis use (4.5% overall) compared with non-pregnant women and use decreases markedly through pregnancy (Mark et al., 2016 and SAMHSA, 2015). Pregnant cannabis users are more likely than non-pregnant users to report daily use (16.2% vs 12.8%) and more likely to meet criteria for a cannabis use disorder (18.1% vs 11.4%) (Ko et al., 2015).
Although, at the federal level, cannabis remains classified as a schedule 1 drug, many states have liberalized cannabis laws allowing for medical and recreational use. As cannabis use is common and as changes in state policy may influence use patterns in pregnancy, we review the implications of policy changes for maternal and child health.
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The endocannabinoid system is present early in fetal development and mediates neuronal maturation and development of the neurotransmitter system. Because cannabinoids are small lipophilic molecules able to cross the placenta, one concern of cannabis use during pregnancy involves the consequence of exogenous cannabinoids stimulation of the endogenous cannabinoid system, specifically whether cannabis use interferes with fetal brain growth and neurodevelopment (Russo et al.,2002). As cannabinoids can be present in breastmilk, concern regarding exposure and its effects continue after birth (Perez-Reyes and Wall,1982,
3. Patient motivation and provider counseling
4. Available evidence and its limitations
Many pregnant women who use cannabis are concerned for their health and that of their baby-to-be and seek information about cannabis and pregnancy. However women report little receipt of concrete information from health care providers and turn instead to friends and the internet (Jarlenski et al., 2016).
In fact, there is ample evidence concerning the health effects of cannabis during pregnancy. Neonatal outcomes of cannabis use in pregnancy were first described in 1982 (Hingsonet al., 1982) and there have been a wealth of publications since, as demonstrated in Fig. 1. Using the search strategy “pregnancy AND cannabis OR marijuana” in PubMed and limiting to human studies only reveals a marked increase in publications since 1990, with over 800 per year since 2000. The literature isrobust enough to support 4 systematic reviews and meta-analyses (English et al., 1997; Metz and Stickrath, 2015; Gunn et al., 2016; Jacques et al., 2014). Additionally there are four prospective cohorts evaluating the long term outcomes including into young adulthood (Goldschmidt et al., 2008; Fried et al., 2003; Marroun et al., 2016; Dreher et al., 1994).
Indeed providers do not appear to provide adequate counseling. In recent study evaluating providers' responses when patients selfdisclosed cannabis use during a prenatal care visit, 23% of providers did not even acknowledge the disclosure and 48% provided no specific counseling regarding cannabis and its effects on pregnancy. Of those who did provide some counseling, 70% of the time was spent on punitive content such as legal implications and investigations by child protective services (CPS). Notably, African American patients were nearly 10 times more likely to receive punitive counseling. When providers chose to provide medically related counseling, only 26% of the time was the counseling clear and evidence based. Most providers that chose to provide counseling gave vague, general statements and gave no or unclear reasoning for their recommendations (Holland et al., 2016a, 2016b). Holland and colleagues also conducted semi-structured interviews with providers and found that many providers who relied on punitive counseling admitted that they felt the evidence was unclear. One provider stated “I don't feel that I have all that much information” and many providers admitted using punitive counseling and “scare tactics” (Holland et al., 2016a, 2016b). This reliance on punitive counseling is problematic in two ways. First, it can cause a fracture in the doctor patient relationship and make the patient feel as though she is being threatened and should not be forthcoming with information. Perhaps more importantly, when providers use the illegality of cannabis as the main reason for recommending against it during pregnancy, if and when it becomes legal this implies that concerns regarding use in pregnancy will no longer be a public health issue. There are several possibilities as to why providers avoid counseling patients on the harms of marijuana. It is possible that they find the evidence cumbersome to interpret and therefore to explain. Some providers may fear that their patients will not understand the nuances or they may possibly not understand it themselves. Alternatively, it is possible that some providers do not believe that there is harm associated with neonatal cannabis exposure. One could argue that with the sheer amount of evidence that exists, any catastrophic consequences would be clear by now. Although this is possibly true, the absence of severe harm is not the same as evidence of safety. The contemporary view of cannabis that is leading to its legalization is effecting our medical assessment of its safety. However, the justification for decriminalization and legalization of cannabis has less to do with its safety and more to do with the structure and framework of the criminal justice system. In medicine, equating the legal status of a substance with its safety is not only inaccurate, it can be dangerous as we have seen with the prescription opioid epidemic.
Fig. 1. Resulting articles from Pubmed search using terms “pregnancy AND cannabis or marijuana”.
Taken together, the literature supports at best subtle and likely confounded effects. Although meta-analysis from the 1990s showed no effect of cannabis on birth weight, more recent meta-analyses demonstrate a decrease in weight among cannabis-exposed newborns with a pooled mean difference of 109 g (95% CI: 39, 180) (Gunn et al., 2016), perhaps reflecting an effect of the increase in THC concentration in cannabis in the past decades (ElSohly et al., 2016). Additionally cannabis-exposed newborns were more likely to be admitted to the NICU (OR 2.02; 95% CI: 1.27–3.21) (Gunn et al., 2016). Other outcomes that have been noted in neurologic studies include impaired visual acuity, verbal reasoning and comprehension and short termmemory as well as poorer test scores (Jacques et al., 2014, Metz and Stickrath, 2015). There are significant limitations to this research. Mental health disorders, socioeconomic and educational factors and controlling for co-use of other substances including tobacco are just a few of the challenges that are encountered in this area of study. The quantification and measurement of timing of exposure is challenging and many studies rely on recall of participants and utilize binary rather than quantitative measures of exposure. Perhaps most important in interpretation of this literature is recognizing the bias against the null hypothesis: deleterious effects are reported whereas negative effects are not. This is true not only in the popular media, but also within conference proceedings and peer-review publications.
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In a now classic paper, Koren et al. reviewed abstracts submitted to the Society for Pediatric Research on fetal outcomes of cocaine exposure. Only abstracts that found a positive correlation between exposure and poor outcomes were accepted although the quality of the methodology of those with negative findings was higher (Koren et al., 1989). We see this in the cannabis literature where among a battery of thousands of neurologic tests, the rare differences between exposed and unexposed children were highlighted and the fact that these outcomes were only measurable at certain ages of the children was minimized (Jacques et al., 2014, Metz and Stickrath, 2015). It is possible that its illicit status has led researchers to seek out negative outcomes as it is the assumption that substances that are illegal are harmful. The evidence base for maternal-infant health outcomes of cannabis use in pregnancy is more robust than for many other substances. However because the associations of cannabis and birth outcomes are neither absent nor catastrophic, rather they are at best subtle and moderated by other behaviors such as smoking and the presence of co-occurring mental health conditions, prenatal care providers appear to be reluctant to discuss cannabis use in general and rarely properly detail risks. The evidence supports slightly lower birth weight (of unclear clinical significance), increase NICU admissions (may be biased by provider knowledge of maternal behavior), and slight effects on executive function (a finding strongly moderated by the caregiving environment).
5. Legalization and its potential implications In the non-pregnant population it is anticipated that use will increase with legalization (Hall and Lynskey, 2016), but it is unclear whether and how women's perceptions of cannabis and use patterns in pregnancy will change as states move towards decriminalization and legalization. There are two small studies (published as abstracts only) from Colorado evaluating use before and after legalization. One, based on combination of selfreport and urine toxicology, showed an upward trend in use (Allshouse and Metz, 2014). The other measured meconium for THC among high-risk newborns. From 2012 to 2014 there was a slight increase in THC positive samples (from 10.6 to 11.7%) indicating a minimal change in population prevalence but a larger increase in the THC concentrations of positive samples (from (from 213 to 361 ng/g) (Jones et al., 2015) which reflects an
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increase in cannabis potency, an increase in the frequency of use, or, possibly, an increase in availability of edible cannabis. Legalization has increased the use of alternative forms of cannabis such as edibles in a non-pregnant population (Monet et al., 2015). More research is needed into cannabis use behaviors during pregnancy in terms of the effects of both liberalizing policies and new cannabis products on the market so as to develop appropriate factually sound harm reduction public health messaging. Disclosure of cannabis use appears to be related to its legal status as rates of concordance between self-report and urine toxicology increased following legalization (Allshouse and Metz, 2014). Therefore it is possible that while liberalization of cannabis policy may lead to an increase in use during pregnancy, pregnant women may also be more forthcoming thereby improving dialogue and the possibility of counseling during prenatal care. It is possible if not likely that, as with alcohol, there are trimester dependent and dose dependent differences in perinatal outcomes. Additionally, different routes of consumption may have different fetal effects. With legalization of cannabis, these subtle differences may be able to be more accurately defined. Lastly, our understanding of the medicinal benefits of cannabis are still very limited. Many women who continue to use marijuana throughout pregnancy report that they do so because of nausea (Westfall et al., 2006) and perhaps this potential benefit can be further explored if its illicit status is reversed. Future research should therefore include investigation of potential benefits of cannabinoids and not simply focus on potential harms. Accurate measurement of use is essential in the field and future research should utilize timeline follow-back methods. Timeline follow-back asks patients to retrospectively estimate their cannabis use on a daily or weekly basis from the date of the interview back. Quantitative estimates derived from this method not only better capture use (and consequentially fetal exposure) and the gestational timing of use, but greater uptake of this method would allow more meaningful comparisons between studies. Although the landscape of cannabis law and policy is changing, that of child welfare has not. The Child Abuse Prevention Treatment Act directs states to assess substance-exposure at birth and provide a “plan of safe care” for infants identified (DHHS, 2010; 2011). However states differ greatly in terms of policy. Eighteen states require reporting of substance-exposed newborns to child protective service, 3 consider substance use during pregnancy as grounds for civil commitment, and another 18 define substance use, including cannabis, as child abuse (Guttmacher Institute, 2016). Cannabis can remain positive on a toxicology screen for much longer than other substances and has the potential for a positive screen with second hand exposure, which increases the chances of it being detected during pregnancy (Huestis, 2007). There has not been a corresponding liberalization of child welfare laws parallel to cannabis policy. Therefore, depending upon state of residence, cannabis use in pregnancy could result in a child abuse charge, which could have profound implications for the woman's employment and livelihood as well as her family integrity. Prenatal care providers need to be aware of their local statute and reporting requirements and need to balance the potential negative consequences of child welfare involvement with the actual health and safety of the pregnant woman and her family.
6. Conclusion Cannabis use is common and increasing among women in the United States. Liberalization of cannabis at the state level both reflects and will influence use and attitudes towards use during pregnancy. Although there is a theoretical potential for cannabis to interfere with neurodevelopment, human data drawn from 4 prospective cohorts have not identified any long-term or long lasting meaningful differences between children exposed in utero to cannabis and those not. Scientifically accurate dissemination of cannabis outcomes data is necessary. Risks should be neither overstated nor minimized, and the legal status of a substance should not be equated with safety. Decreasing or stopping all substance use should be encouraged during pregnancy. Providers must recognize that even in environments where cannabis is legal, pregnant women may end up involved with child welfare. In states where substance use is considered child abuse this may be especially catastrophic. Above all, care for pregnant women who use cannabis should be non-punitive and grounded in respect for patient autonomy (ACOG, 2016).
References Allshouse, A., Metz, T., 2014. Trends in self reported and urine toxicology (UTOX) detected maternal marijuana use before and after legalization. Am. J. Obstet. Gynecol. 1,S444–S445 (abstract only). American Congress of Obstetricians and Gynecologists, 2016. Committee opinion 664: re-fusal of medically recommended treatment during pregnancy. Am. J. Obstet. Gynecol. 127e, 175–182. Brown, Q.L., Sarvet, A.L., Shmulewitz, D., Martins, S.S., Wall, M.M., Hasin, D.S., 2017. Trends in marijuana use among pregnant and nonpregnant reproductive-aged women 2002-2014. JAMA 317 (2):207–209. http:// dx.doi.org/10.1001/jama.2016.17383. Department of Health and Human Services, 2010. The child abuse prevention and treat-ment act. https://www.acf.hhs.gov/sites/default/files/cb/ capta2010.pdf (accessed De-cember 31, 2016). Department of Health and Human Services, Children's Bureau, et al., 2011. https://www.childwelfare.gov/pubs/factsheets/about/ (accessed December 31, 2016). Dreher, M., Nugent, K., Hudgins, R., 1994. Prenatal marijuana exposure and neonatal out-comes in Jamaica: an ethnographic study. Pediatrics 93 (2), 254– 260. ElSohly, M., Mehmedic, Z., Foster, S., Gon, C., Chandra, S., Church, J., 2016. Changes in can-nabis potency over the last 2 decades (1995–2014): analysis of current data in the United States. Biol. Psychiatry 79 (7), 613–619. English, D., Hulse, G., Milne, E., Holman, C., Bower, C., 1997. Maternal cannabis use andbirth weight: a meta-analysis. Addiction 92 (11), 1553–1560. Fried, P., Watkinson, B., Gray, R., 2003. Differential effects on cognitive functioning in 13-to 16-year-olds prenatally exposed to cigarettes and marihuana. Neurotoxicol.Teratol. 25, 427–436. Goldschmidt, L., Richardson, G., Willford, J., Day, N., 2008. Prenatal marijuana exposureand intelligence test performance at age 6. J. Am. Acad. Child Adolesc. Psychiatry 47, 254–263. Gunn, J., Rosales, C., Center, K., Nunez, A., Gibson, S., Christ, C., Ehiri, J., 2016. Prenatal ex-posure to cannabis and maternal and child health outcomes: a systematic review and meta-analysis. BMJ Open 6, 1–8. Guttmacher Institute, 2016. Substance abuse during pregnancy. https:// www.guttmacher.org/state-policy/explore/substance-abuse-during-pregnancy (accessed December 1, 2016). Hall, W., Lynskey, M., 2016. Evaluating the public health impacts of legalizing recreationalcannabis use in the United States. Addiction 1111, 1764–1773. Hingson, R., Alpert, J.J., Day, N., Dooling, E., Kayne, H., Morelock, S., Oppenheimer, E.,Zuckerman, B., 1982. Effects of maternal drinking and marijuana use on fetal growth and development. Pediatrics 70 (4), 539–546. Holland, C., Nkumsa, M., Morrison, P., Tarr, J., Rubio, D., Rodrigez, K., Kraemer, K., Day, N.,Arnold, R., Chang, J., 2016a. “Anything above marijuana takes priority”:obstetric pro-viders' attitudes and counseling strategies regarding perinatal marijuana use. Patient Educ. Couns. 99 (9), 1446–1451.
Article source:
Mark, K., Terplan, M., Cannabis and pregnancy: Maternal child health implications during a period of drug policy liberalization, Prev. Med. (2017), http://dx.doi.org/10.1016/j.ypmed.2017.05.012
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