A Letter for Camp Counselors When Your Kid Has CF

If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.

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Lisa C. Greene, M.A., CFLE
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Summer camp: starry nights, fun in the sun, adventures, and friendships.

Summer camp holds so many opportunities for all kids to enjoy and grow. It also provides an opportunity for parents to grow too. This is especially true when a child has special medical needs, such as those that come with cystic fibrosis.

When I sent my own kids with CF to summer camp, I included the following letter along with the camp registration. I also made sure the kids' actual camp counselor got a copy. After the first day, the camp director came up to me and thanked me profusely for having this information available for them and for helping them understand my children's needs.

I hope you find the sample of this letter below helpful as your kids are out there learning new things and experiencing the joys of summer camp.


 

June 1, 2017

Dear Camp Counselor,

Jacob has cystic fibrosis -- a life-threatening, genetic disease in which a defective gene causes the body to produce unusually thick, sticky mucus that can clog the lungs, pancreas, and other organs. This buildup can lead to severe respiratory and digestive problems. CF is not contagious, and the types and severity of symptoms can differ widely from person to person.

Jacob's health has been very good so far, but he does require a lot of care. Our specific needs to keep Jacob healthy during camp are as follows:

  1. With snacks and meals, Jacob needs to take pancreatic enzymes to digest food (see below for dosing). The enzymes need to be taken immediately BEFORE he eats. Although Jacob will have his enzymes with him and is very good about remembering to take them on his own, he might forget in the excitement of camp. So, please feel free to ask him if he has taken them. If he forgets, he can still take them within 10 minutes of eating; otherwise, skip them. One missed dose shouldn't hurt, but repeated missed doses could cause intestinal problems.
  2. Hand washing is critical because it is the best way to prevent germs and colds. A cold can turn into a lung infection for Jacob, which could require hospitalization. We ask that you wash your hands before eating and enforce your sick policy at camp. Our motto is “prudent, but not paranoid.” Thanks for your help with this.
  3. During hot weather, please make sure that Jacob gets plenty of fluids and salty snacks, which we will provide. CF depletes the salt in his body very quickly, so dehydration can be an issue. He should be allowed to drink water at any time to help with this. We would appreciate you allowing him to keep a water bottle handy at all times.
  4. There are times when Jacob needs to go to the bathroom immediately, and he can sometimes take a while for bowel movements (10-15 minutes is the usual time needed, sometimes three or four times a day). Please allow Jake to go to the bathroom at any time and be aware of the length of time he might need in the bathroom.
  5. We talk freely about CF with discretion and sensitivity (with Jacob and everyone else). When other kids (inevitably) ask about why Jacob takes medicine, we explain that “they are called enzymes, and they help him digest his food because his tummy works differently than ours. Because that's how he was born and everybody is different."
  6. Even though Jacob might need some extra care at times, he is first and foremost a kid and wants to be treated like all of the other children at camp. Except for the mentioned items, he shouldn't be treated differently.

The Cystic Fibrosis Foundation at CFF.org is a great reference for further information if you are interested.

Thanks so much for caring for Jacob. If we work together, our hope is that Jacob will stay healthy throughout his time at camp. Please let us know if we can answer any questions. We look forward to a fun and healthy summer camp experience!

Best Regards,                                                            Enzyme Dosing                                                                         

Lisa Greene                                                                 Meals: ______________
Phone #
                                                                                      Snacks: _____________

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Topics
Caring for a Child With CF | Parents & Guardians | Social Life and Relationships
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As a national public speaker, Lisa speaks to parents and medical professionals about parenting, medical adherence, transition, and resilience. She is also the author of three books on parenting children with health issues. Lisa is a certified family life educator and parent coach. She holds a master's degree in family life education and teaches college classes at Concordia University in the Department of Child and Family Education. Lisa's mission is to help families learn practical, easy-to-use tools to deal with the everyday challenges of living with CF. You can find more articles by Lisa at www.TipsForCFparents.com.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.