FIRST STEPS FOR MANAGING CYSTIC FIBROSIS DIAGNOSIS

By Dr. Ronald I. Malcolm, EdD

CYSTIC FIBROSIS IS A PROGRESSIVE GENETIC DISORDER INHERITED BY A CHILD FROM BOTH PARENTS. EACH PARENT MUST HAVE ONE COPY OF A DEFECTIVE CYSTIC FIBROSIS GENE, SO THE CHILD INHERITS BOTH COPIES OF THE DEFECTIVE GENE. WHILE THIS DISORDER IS WIDELY KNOWN FOR AFFECTING A CHILD’S LUNGS, IT CAN ALSO HAVE ADVERSE EFFECTS ON THEIR DIGESTIVE SYSTEM AND OTHER ORGANS. GENERALLY, IT WILL CAUSE A THICK MUCUS TO BUILD UP WITHIN THE LUNGS, WHICH CAN LEAD TO LIFETHREATENING INFECTIONS.

So, what is the best way for you to assist your child with managing their cystic fibrosis? Here are 10 simple suggestions for assisting your child.

1. Educate yourself

As a parent with a child who has cystic fibrosis, it is essential you begin to educate yourself as much as possible on your child’s health condition. As your child grows, you will both encounter many “well-meaning” individuals who may not fully understand your child’s medical situation. Many people will simply look at your child and state, “They look healthy to me.” The more educated you become on cystic fibrosis, the better you will become at guiding your child through this journey and educating others effectively on your child’s needs.

Your primary physician may be able to offer you some great resources to read. Your community may host sponsored support groups where you can also obtain valuable information. Check out the Cystic Fibrosis Foundation and

locate a local chapter close to your community that can provide you with additional support and guidance.

2. Learn to accept help

Many family members and friends will reach out to offer assistance upon learning of your child’s diagnosis. They will want to know ways in which they can help. Rather than politely dismissing their offers, consider taking them up on them. Perhaps you can let a neighbor babysit your other kids while you are busy at the hospital with your child with cystic fibrosis, or let the grandparents watch your child with cystic fibrosis so you can do some shopping. Maybe you could allow church members to video chat with your child with cystic fibrosis so you can help your other children with homework, etc. Many who offer to “help” are generally quite sincere in wanting to assist your family. They will feel good about helping, your child with cystic fibrosis will get to interact with different individuals, and you may get a necessary break from your daily routine to renew your own strength.

3. Consider a 504 Plan

Many children attending public school with cystic fibrosis have a 504 Plan. You will need to be an advocate for your own child. While your child may present as “healthy looking” without any academic deficiencies, they may still require a 504 Plan written by their public school. Many children with cystic fibrosis have frequent absences due to illness or require time away from school for regular medical treatments. The 504 Plan will assist you and your child with cystic fibrosis by developing a plan of action to ensure your child does not fall behind academically while attending these medical appointments and missing school.

4. Teaching your child to advocate

Children with cystic fibrosis cannot advocate for themselves if they don’t have a basic understanding of their medical condition. It will be important for you to educate your child on what cystic fibrosis is. This can be done in many different ways. Some parents prefer to do it directly by working with their own child in a one-on-one situation. Other parents prefer additional support provided by a trained medical professional working with the child or a school counselor. There is also a wide array of books that can be given to your child so they can become better educated on how cystic fibrosis will affect them daily. Such books include: • Taking Cystic Fibrosis to School—Cynthia Henry • Mallory’s 65 Roses—Diane Shader Smith • My DNA Diary—Cystic Fibrosis—Lia Mullan • Having Cystic Fibrosis is a Lot Like Being a Super Hero—Dr. Kelsey M. Finn • Terry’s Journey to Cystic Fibrosis Land—Terry Gene Wright As your child becomes more knowledgeable about cystic fibrosis, they will become better advocates for their own needs.

5. Working with the classroom teacher

As we all know, classroom teachers often spend more time with our children than we do as parents. You will need to work with your child’s classroom teacher to better educate them on how to best assist your child. Keep in mind your child with cystic fibrosis may be the first student with this condition with whom the educator has worked. Try not to overload or frighten the teacher of your child. Let them know you are approachable and always willing to assist.

The teacher will want to know how to assist your child as they attend school. Let the teacher know that if they notice your child appears to be coughing more than usual, wheezing, presents with a stuffy nose, or is fatigued, it will be best to contact you. Give them a means for contacting you through your cell phone or an updated e-mail address. In addition, they will need to understand your child may need additional time to eat lunch or even require a snack in the middle of the school day. Many classroom teachers with students with cystic fibrosis have also been trained on how to administer the enzymes younger children with cystic fibrosis require before eating lunch or a snack. This enzyme will assist your child with digesting fats, starches, and proteins. It can also save your child with cystic fibrosis from going to the nurse’s office to get the enzyme they need and encountering another student who has the flu or a high temperature and contracting an illness. Older students with cystic fibrosis have generally been trained to administer their enzymes on their own.

Finally, simple reminders are helpful for teachers, such as reminding them your child may need frequent access to the bathroom. It’s also important not to focus undue attention on your child if they pass gas in class or cough quite a bit during class lectures. And it’s vital not to draw attention if the child needs to change seating arrangements when another student sitting close to them appears to have a cold.

6. Siblings at home

Many children with cystic fibrosis have a sibling who does not have cystic fibrosis. While caring for a child with a chronic health condition can become exhausting and overwhelming, you need to keep in mind the needs of your other children who may not have cystic fibrosis.

Involve them in conversations that allow them to have a better understanding of what is going on with the sibling who does have cystic fibrosis. Arrange your schedule to make time to spend with the sibling(s) who doesn’t have cystic fibrosis, so they don’t become “overlooked.” Many children who have a sibling with a serious health-related condition can feel isolated or lonely in their own families.

Some careful planning can assure your child without cystic fibrosis they have value and you share as much “love” for them as for your other child(ren).

7. Other students with cystic fibrosis

As a parent of a child with cystic fibrosis, it is absolutely essential you understand your child cannot be in direct contact with another student at school who also has cystic fibrosis. While it’s not contagious, children with cystic fibrosis are at a much greater risk of getting and transmitting germs and bacteria that are dangerous to other children with cystic fibrosis. It is often referred to as “cross-infection.” Children with cystic fibrosis have dangerous bacteria in their own lungs that are only contagious to other children who have cystic fibrosis. Such infections can cause a faster decline in your own child’s lung functioning.

This is definitely information that needs to be shared with all the professionals at the school. If your child with cystic fibrosis has another class member who also has cystic fibrosis, they should not be in the same classroom. They should not share common items at school, drink from the same water foundation, use the same bathroom, sit at the same cafeteria table, or be in the school gymnasium together. If two children with cystic fibrosis attend the same school, they should always adhere to a “six-foot apart” rule.

8. PE and sports

Children with cystic fibrosis may tire easily. They need to be taught to advocate and self-manage their own limits.

Involvement in physical education and sports is possible.

In fact, physical exercise can assist a child with cystic fibrosis by loosening some of the mucus that clogs their lungs.

It can also be a healthy way for your child with cystic fibrosis to develop positive social relationships with peers by being involved in similar activities. Children with cystic fibrosis can become dehydrated, so speak to PE teachers and coaches about letting your child drink a 12-ounce sports drink with added salt and carbohydrates for every 20 to 30 minutes they exercise.

9. Planning for hospitalizations

It is not uncommon for children with cystic fibrosis to need additional medical attention that may require hospitalization. Allow your child to be actively involved in this process. While they may “dread” the thought of going to the hospital “again,” plan for things that could give them more control of the situation. See if they have a special pair of pajamas they want to pack for their visit. Let them bring along their laptop so they can “Zoom” with friends and family members, as well as a preferred stuffed animal, video game, or toy, etc. Students with cystic fibrosis may even want to continue with their regular classroom activities and assignments in the hospital as a means of “keeping up” with their peers. As a parent, you just need to ensure they aren’t overdoing it when they should be resting. 10. Enjoy your child

Ensure you take time to enjoy your child for who they are and not just their diagnosis. While cystic fibrosis is definitely a serious part of your child’s life, it is not their entire life. Focus on their abilities and interests. What kind of extracurricular interests do they have? Are they musically inclined, have art-related interests, like working with animals, prefer to bake, love singing, request to debate current topics, display a strong interest in academics, etc.?

Managing their cystic fibrosis will be a lifetime event as they work towards becoming a contributing member of both your family and society. However, loving them and guiding them through childhood, holidays, vacations, and events with family members will be what they seriously remember about you as their parent. Being happy and having a “zest” for life does not have to be dampened due to cystic fibrosis.

Dr. Ronald I. Malcolm, EdD is an Assistant Director of Special Education for a public school district, an Associate Faculty Member with the University of Phoenix, and a Special Graduate Faculty member at the University of Kansas. He has bachelor’s level degrees in English and Special Education. He holds master’s level degrees in Counseling, Special Education, and School Administration. His doctorate degree is from Northern Arizona University in Educational Leadership. His post graduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 37 years with students between the ages of three to 21 with various healthrelated concerns in both school and community-based settings.