PROPOSED DRAFT
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY An "Undefined Illness"?
10/18/2014
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY common consumer products is lacking. Thus, it is claimed that very little is known about it, especially the mechanisms involved with the onset of symptoms. To circumvent the "elephant in the room," there are theories to suggest a possible role for a hypersensitive central nervous system, immune dysfunction and impaired A PERSON WITH MULTIPLE CHEMICAL SENSITIVITY (MSC) SHOULD READ THIS DRAFT PROTOCOL AND DISCUSS IT THOROUGHLY WITH HIS/HER PHYSICIAN AND ATTENDING CAREGIVER(S) TO MAKE ANY NECESSARY MODIFICATIONS OR THE LIKE. DRAFT PROTOCOL STARTS ON PAGE SIX (6). WHEN ENCOUNTERING A PERSON (prospective patient) with (MCS) or Chemical Injury or Chemical Intolerance, this is what you should know: Overview | Multiple Chemical Sensitivity (MCS) is the name given to a syndrome in which a sufferer experiences multiple symptoms upon exposure to minute amounts of everyday chemicals. There is currently no officially recognized definition for MCS. This is due to the fact that it is becoming pervasive but the political will to pin point the causes to petrobased compounds used in many
detoxification by liver enzymes. Some medical professionals, and even organizations, continue to insist that the syndrome is psychological in origin, even in the face of a growing amount of evidence from studies that show clear abnormalities in people with MCS on exposure to normally safe levels of chemicals. Through 1999 there were a total of 618 scientific articles, editorials, books, book chapters and reports relating to MCS. Of these, 308 supported an organic/physiological basis for symptoms whereas only 137 supported a psychological interpretation. Although there is no definition universally accepted by the established medical institutions since 1999, MCS experts (Bartha et al 1999) have come to a consensus on the criteria for diagnosis, and thus far these criteria remain unrefuted in the published literature.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
1
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY These criteria are as follows:
diagnosis of chemical sensitivities may result in incorrect treatment
The symptoms are reproducible with [repeated chemical] exposure. The condition is chronic. Low levels of exposure [lower than
and possible iatrogenic harm resulting from the activity of physicians; said of any adverse cond ition in apatient resulting from treat
previously or commonly tolerated] result in manifestations of the syndrome. The symptoms improve or resolve when the triggers are removed.
ment by a physician or surgeon.
Responses occur to multiple chemically unrelated substances. Symptoms involve multiple organ systems.
chemicals (Gulf War veterans, and farmers using pesticides for example). For other sufferers the illness develops over a long period of time most likely involving chronic low level
MCS/Toxic Injury is NOT a result of an allergen. It is a result of exposure to a toxin/toxicant.
Symptoms | Many MCS sufferers can trace the start of their illness to an acute exposure to highly toxic
In brief, MCS is an acquired chronic
exposure to chemical substances. Although MCS can occur on its own, a large number of sufferers also suffer from CFS, Fibromyalgia and other related disorders. This obviously
disorder characterized by recurrent symptoms in response to exposure to multiple, unrelated chemicals ("chemical cocktails") in the
points to the possibility that all these illnesses are part of the same underlying process and likely have common causes.
environment. The symptoms generally occur in one of four categories: central nervous system, circulatory, respiratory, and hepatic, including liver and spleen.
MCS is a chronic condition with the patient usually experiencing some level of "unwellness" all the time. However, patients have an acute
Moreover, as of 2011, the prevalence of MCS of the U.S. population was at 13 percent (approximately 40 million). This calls for informed
reaction when exposed to minute amounts of the chemicals to which they are sensitive. Often the level of a chemical that triggers a reaction may be so low that the sufferer cannot
medical help for people with chemical sensitivities. Missed
even smell it.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
2
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY Common symptoms of MCS upon exposure:
hydrocarbon based volatile organic chemicals (VOC’s). Phenols (containing
Fatigue Headaches Disorientation
benzene) are commonly implicated. With everyday cosmetic and household chemical products, it is generally the addition of perfume that
Dizziness and faintness Flu-like symptoms Memory loss Visual problems Nausea
makes them bad news for MCS sufferers. Typically a sufferer will notice a sensitivity to one or two things to start with, perfume and cigarette smoke for example, and then
Irregular or rapid heartbeat Muscle and/or joint pain Gastrointestinal problems Mood disturbances such as depression/anxiety/irritability
will rapidly become sensitized to more and more chemical sources over a relatively short period of time. The reasons for this common occurrence are unknown but it is clearly
Short-term altered mental status Asthma/Breathing Problems Rashes Difficulty concentrating Flushes
something that needs to be investigated. 3 Common triggers in MCS are— pesticides (e.g., organophosphates
Most sufferers have a distinct reaction upon every exposure. It is common to
and organochlorides—DDT, chlordane, lindane, dieldrin)
first experience dizziness, disorientation, rapid heartbeat and mood changes followed by flu-like illness and muscle/joint aches. In severe cases, the flu-like illness and
fragrances (perfume) (benzaldehyde,
aching can persist for days.
dichlorobenzene); note that all of these chemicals are known to have negative health consequences, mainly due to effects on the central nervous system
Triggers | Reactions in MCS are triggered by a vast array of everyday chemicals from perfume to diesel
benzyl acetate, benzyl alcohol, camphor, ethanol, ethylacetate, limonene, linalool, a-pinene, gterpinene, a-terpineol,
exhaust. The common ingredients in most of these chemical products are PROPOSED DRAFT FOR DISCUSSION PURPOSES
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY gasoline | vapors cause central nervous system depression, including
additives and preservatives, medications, unfiltered water‌and
eye and respiratory irritation, dizziness, headache, drowsiness, and incoordination
more.
vehicle exhaust | major exhaust
Impact on Quality of Life | As a
fumes include carbon monoxide, nitrogen dioxide, sulphur dioxide, benzene, formaldehyde, polycylic hydrocarbons, and suspended
devastating illness, an MCS sufferer typically becomes more and more isolated and withdrawn as they simply can’t be around people (wearing
particles (PM-10)
perfume, deodorant etc.) or in public spaces where chemicals are routinely used. MCS sufferers often lose their jobs as they cannot tolerate the chemicals in the work environment,
household cleaning products, dishwasher detergent, including laundry liquid/powder, fabric softener, air fresheners, and bathroom/kitchen detergents | common chemicals include diethyl phthalate, toluene, hexane/xylene
This list is not all inclusive.
and relationships often break down as the partner is unable to understand or adapt to living without the use of common chemical products. To add insult to injury, because of the current
personal care products & cosmetics including shower gels and liquid soap, nail varnish, hair styling products, hair conditioners, sun
medical confusion over the illness, patients often have to endure being labelled as attention seekers or hypochondriacs, as well as having to
lotions, scented soaps | some of the
fight, often in court, to be granted disability benefits and appropriate housing.
common chemicals include cocoamide DEA, sodium lauryl sulfate, acetone, benzaldehyde.
NOTE: If the primary doctor doubts Other triggers include cigarette smoke, natural gas, new carpets made with benzene derivatives, formaldehyde and the like, particle board, marker pens, soft plastics,
that Multiple Chemical Sensitivity is NOT physiological and believes the roots are psychological, that doctor is not an appropriate health care provider for the person with MCS.
newspapers/magazine, paint, varnish, solvents, glues/adhesive, food
Such a doctor can do more harm than good and needs to do further
PROPOSED DRAFT FOR DISCUSSION PURPOSES
4
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY research on recent findings that point to physiological origins.
5
PROPOSED DRAFT FOR DISCUSSION PURPOSES
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY
DRAFT PROTOCOL o Reassure the patient that you understand he/she is sensitive to chemicals and will work with him/her in providing care. o Be sure to ask what exposure(s) she/she recently encountered. o Be sure to ask what the patient is sensitive to, including his/her history of reactions to various drugs you may consider to administer. NOTE: Persons with MCS are the experts related to their own needs and requirements. Therefore, it is important to have the patient involved in the development of their care plan. A comprehensive assessment is required, and the medical history may be extensive as MCS affects many systems. o Take into consideration the five stages of grief or loss of good health and determine which stage the patient is in regarding his/her condition— (1) denial and isolation (2) anger (3) bargaining
(4) depression (5) acceptance o Carefully note environmental sensitivities, food and drug allergies and their reactions. Note how the patient copes with his/her MCS as it varies dependent on the actual sensitivities specific to that patient. Include what specific equipment they use, their usual medications or remedies, alternative measures or oxygen. o Determine if oxygen therapy is required and prescribe it. o Place a high-alert allergy band on the patient and mark it MULTIPLE CHEMICAL SENSITIVITY (MCS). o Educate the caregiver(s) to the patient's condition of MCS. o Discuss diet needs of patient and indicate on diet order that the diet is a special-needs diet for MCS. Only pure food should be served that do not contain preservatives, dyes, colorings, MSG, aspartame, or other GRAS foods (e.g., margarine). o Consult a dietician for dietary needs; retain dietary requirements in the patient's medical record for future reference.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
6
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY o Allow patient to supply his/her own tolerated food products and dietary supplements. o Assign a private room with negative pressure if available. Do not use a room that has been recently exposed to any type of fragrance or VOCs. Maintain patient isolation from other patients and their visitors at all times. o A room without carpeting is essential for the safety of the patient. o Change the linens on the bed that are fragrant-free (e.g., without any Febreze fabric softener). Not all so-called scent-free products are toxin free! o Flag the patient's chart or other written information that he/she is chemically sensitive. o Whenever possible, take the patient's own medical supplies and equipment with them, including oxygen mask and tubing, medications, food and water, bedding, clothing, and soap. He/she may be sensitive to such items issued at a shelter, hospital, or clinic. o If drugs are administered—
(1) administer low doses with caution and keep them as simple and as minimal as possible; (2) use IV fluid bottled in glass without dextrose if possible (many persons react to cornbased dextrose); (3) capsules are generally better than tablets because they have fewer binders, fillers, and dyes; (4) if administering anesthesia, use short-acting regional rather than general anesthesia whenever possible and avoid the use of halogenated gas anesthetics. o Consult with the patient's environmental physician or acupuncturist if possible. o If the patient is taken to an emergency shelter or a hospital, help protect him/her from air pollution. Some suggestions— (1) avoid placing the patient in rooms with recent pesticide sprays, strong scented disinfectants, cleaners, new paint or carpet, other recent remodeling, a recent patient wearing any fragrance; (2) place a sign on the door, stating the patient inside has MCS; and add ""Check at the nurses' station before entering the patient's room"; (3) assign caregivers* who are not wearing fragrances (e.g.,
PROPOSED DRAFT FOR DISCUSSION PURPOSES
7
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY perfume, fabric softener, Febreze on clothes, and who do not smoke); (4) allow the patient to wear a mask or respirator, nebulizer, use oxygen mask, or an air filter, or open a window as needed; (5) keep the door to the patient's room closed (6) reduce time the patient spends in other parts of the hospital, if possible, by performing as many procedures and evaluations as possible in his/her room; (7) transport patient with P95 mask or personal respirator. * Caregivers: Staff caring for patient is to refrain at all times from wearing perfumes, scented lotions, hair spray, scented shampoo, deodorants, or scented products and use only unscented soap to wash their hands. Staff should also be aware that the laundry soaps and fabric softeners they use to wash their uniforms will affect the patient and should not use these products when caring for any patient with MCS! In fact, all members of the medical team should be fragrance-free, especially in regards to scented clothing, colognes, and the like.
o Obtain Purple Nitrile Medical Exam Powder Free Glove Kit and place in room. o Do not use any Sharpie writing instruments or the like that have a strong odor. o Order a bottle of hydrogen peroxide to use as skin prep for IV initiations and phlebotomies. o If patient requires oxygen, open tubing, mask, or prongs package, "air out the item(s) before use with patient. Wipe the mask/prongs, and tubing with hydrogen peroxide and flush the tubing with oxygen or medical air prior to applying to patient. These actions are necessary to dissipate the scent of the plastic. o Keep the use of plastic to a minimum. Use paper tape instead of plastic tape. o Allow the patient, or provide, purified water for drinking. o Do not allow open containers with chemical to sit in the room. o No plants, flowers, magazines, newspapers are to be placed in the patient's room as they emit VOCs.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
8
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY o Whenever possible, ensure that the air is fresh (not artificially "fresh"). o Utilize charcoal and baking soda to absorb and remove odors from the room. Open windows if possible. o Communicate and cooperate with the patient whenever possible as the patient generally knows what will help. o Observe the patient for the following symptoms o o o o o o o o o o o o o
o o o o o o o
fatigue memory loss depression nervousness lack of motivation visual problems hearing problems dizziness sleep disorders edema inflammation of head tissue syncope spastic muscles (.2 mEq/kg of magnesium over a 4-hour period daily may relieve spasms) pulling parathesias hypoesthesia hyperventilation seizures asthma severe anaphylaxis disorientation
o o o o o o o o o o o o o o o o o o o o o o
confusion irritability hoarseness loss of coordination loss of logic sequencing ability shortness of breath headache chest pain joint pain digestive difficulties tingling sensations in any part of the body numbness of extremities digestive difficulties cold or heat sensitivity rashes nausea sinusitis rhinitis pallor anemia hives any other symptom
Report to physician any signs and symptoms exhibited by patient. o In case of surgery, test Betadine, tape, and suture material 48 hours prior to surgery to observe any adverse reaction. PRE-OP PROCEDURES o Wash down operating room with water and baking soda solution to remove disinfectant and pesticide odors.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
9
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY o Ensure that the patient has been prepared for surgery by lowering his/her total load of chemical exposures and increasing his/her intake of antioxidants, vitamins, and minerals. High levels of vitamin C before and during surgery (1 to 4 grams every four hours) helps to tolerate chemical overload. PRE-OP MEDICATIONS o No oral medication if possible. Avoid antihistamines and steroids if possible. Benadryl or an injection of 0.4 to 0.6 ml of IM atropine may be used to prevent excess secretions. Also, Atarax is usually safe. Usually, atropine or morphine-demerol compounds are sufficient for pain control. To alkalinize stomach contents to reduce problems with aspiration pneumonitis, use Akla Seltzer (without aspirin). For intravenous fluids, use IV 0.45 normal saline in glass bottles, not plastic. Soft plastics, such as those used for IV drips and blood bags contain phthalates, which include many toxic chemicals such as hormone disrupters. These chemicals leach into the IV solution and can cause reactions in the patient with MCS. Glass bottled 45 NS available from Merit
Pharmaceuticals ((800) 6963748). If dextrose or Ringer's solution is used, observe for a reaction due to its corn content. For fructose and invert sugars, contact company beforehand to check formulations and sources. ANESTHESIA o Do not test anesthetic drugs before use. o All drugs should be checked for preservatives. o Sodium penathol, Versad, Phyentanyl (long-acting opiod) are recommended drugs for induction and maintenance of anesthsesia. 10 o The basis for anesthesia to work well— (1) the patients inhales 100% oxygen for five minutes; (2) Bolus of sodium pentothal or other short-acting barbiturate is used for induction; (3) followed by curare (a longacting morphine compound) and a long-acting scopolamine compound. Succinyl choline chloride (Anectine) may also be used to paralyze. Sublimaze and Innovar can be used to obliterate memory. o For shorter procedures, the patient may use the Brevitol drip.
PROPOSED DRAFT FOR DISCUSSION PURPOSES
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY o Diprovan is recommended for induction and/or regional anesthesia.
o In-line intravenous filters should be used for higher tolerances.
o Use local anesthetics such as preservative-free and epinephrine-free xylocaine or carbocaine whenever possible. No halogenated hydrocarbons (Fluothane, Ethrane, Penthrane). The patient can get dramatically worse with gas anesthetics. If recovery occurs, it may involve several days of recovery.
o Use TENS unit or acupuncture for pain control. Vicodan may be okay for pain.
o Avoid inhaled anesthetic, if at all possible, since the fluorinated hydrocarbons and nitrous oxide are known to be immune-suppressants. If required, nitrous oxide is to be used only in as limited a level as is possible. SURGERY o Do not use any dyes. o Safe sutures are silk, cotton, gut-lamb. Avoid synthetics. o Recommended lab work for surgery—CBC, urinalysis, SMA 20, liver function. POST-SURGERY o Antibiotics given intravenously provoke fewer reactions than orally administered antibiotics.
FURTHER NOTES/MODIFICATIONS _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________
PROPOSED DRAFT FOR DISCUSSION PURPOSES
11
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________
THE INFORMATION PROVIDED IS NOT INTENDED TO BE A SUBSTITUTE FOR A PHYSICIAN'S CARE OR TREATMENT. CONSULT WITH THE PHYSICIAN BEFORE ACTING ON ANY OF THE RECOMMENDATIONS. THIS DRAFT PROTOCOL IS PROVIDED IN THE ABSENCE OF A PROTOCOL THAT SPECIFICALLY MEETS THE NEEDS OF A PERSON WITH MULTIPLE CHEMICAL SENSITIVITY. IN FACT, THIS IS A CALL FOR AN OFFICIAL PROTOCOL. THE CDC NEEDS TO RECOGNIZE MCS AS A SERIOUS PUBLIC HEALTH CONCERN. According to a research study in 2011, ninety physicians practicing in the State of Virginia responded to a mail survey regarding MCS, over half believed chemical sensitivity to be a combination of medical ("a chemical exposure and genetics") and psychological condition (resultant response could be "depression, generalized anxiety, posttraumatic stress disorder, hopelessness"), slightly skewed towards physiological etiology. No physician endorsed a purely psychological etiology. The following statement should be taken into consideration regarding a June 2008 report published in "The Journal of Environmental Health" on "The Challenges of Multiple Chemical Sensitivity" which noted the following: Regardless of whether MCS is a legitimate physiologic disease process or not, giving it due consideration is a
PROPOSED DRAFT FOR DISCUSSION PURPOSES
12
PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY useful exercise for the public health community. If proven scientifically valid, MCS would significantly affect public health in general and environmental health specifically. MCS could fundamentally alter our understanding of pathophysiology, affecting disease research design and disease prevention measures. On a much broader level, the government, private sector, consumers, and general population would be engaged in a partnership that would benefit all of public health. A nimble, adaptable public health infrastructure benefits by considering MCS and the state of environmental health. It is an important exercise to consider these implications and the ability of public health to respond. A public health community that is unable or unwilling at a minimum to contemplate paradigm-altering possibilities neglects its duty. With such significant implications, neglect would be insensitive. Last but not least, every person with MCS symptoms varies in severity as well as symptoms due to a particular chemical exposure. Some persons have been suffering for a long time or some are recently aware of certain sources that are causing symptoms. Find out if the person has had/has extreme difficulties with any specific chemical exposures. One person's extreme may not be that of another's. There cannot be any generalization of MCS beyond the consensus criteria for diagnosis. For an example, a person a severe condition may not even be able
to tolerate an ink pen in her/his surroundings. The symptoms may vary according to the possible multiple organs that may be afflicted. It is vital to check a person's organ health (e.g., heart, spleen, kidneys, lungs, liver, skin).
13
Compiled from various online sources (October 18, 2014)
PROPOSED DRAFT FOR DISCUSSION PURPOSES