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School Issues > Letter to Teachers about My Child's CF

Following is the letter I send to teachers a few days before school starts. I offer to meet with them ahead of time to discuss things but it is generally not necessary. I have had several teachers tell me that this is very thorough and answers all of their concerns very well. I also give a copy to the office, school nurse, PE teacher, etc. I hope this helps!  Also, don't forget to change the name and gender (the he's and she's) where needed.

(Date Here)

Dear (Teacher’s name here),   

Kasey (Name of your child here) has a genetic disease called Cystic Fibrosis. Please see the attached paperwork for an explanation of what this is. Her health has been very good so far but she does have some issues you should be aware of. We have found that, along with the many doctors we see, you are our most valuable partner in keeping Kasey healthy. Here are some ways you can help us with her special healthcare needs while she is at school: 

1.      With meals/ snacks she needs to take pancreatic enzymes to digest her food (please see dosing below). The enzymes need to be taken between 5 and 10 minutes BEFORE she eats. Just give them to her with some water. She is very good at taking them. If they are forgotten, give them to her if within 30 minutes of her eating food, otherwise skip it. Don’t worry, one missed dose won’t hurt but repeated missed doses could cause serious intestinal problems.

2.      Frequent hand washing is critical because it is the best way to prevent colds. A cold can turn into a lung infection for Kasey, which might require hospitalization. Our motto around home is “prudent, but not paranoid.” Cold/ flu season is a tough time and we do the best we can. If another child is obviously sick (green runny nose, fever, etc) it is especially important to strictly enforce your sickness policy.     

3.      We would appreciate it if Kasey could have her own set of scissors, glue, markers, etc. We are happy to provide them for her (just let us know what is needed). The reason for this is to reduce her odds of contacting a cold or virus from other children especially during flu season.

4.      During hot weather, please make sure Kasey gets plenty of fluids and salty snacks, which we will provide. CF depletes the salt in her body very quickly so dehydration can be an issue. She should be allowed to drink water at any time to help with this issue. We would appreciate you allowing her to keep a water bottle at her desk.

5.      It is very important that Kasey has enough time to eat all of her food at lunchtime. Kids with CF have a high calorie, high fat diet so please be aware of this when you teach about nutrition. Kasey needs to eat around 3500 calories per day and adherence to her special diet is key to staying healthy. She may need to have extra snacks if she starts losing weight. Also, kids may be critical of her high fat food at lunchtime so anything you can do to help them understand that “people are different” is appreciated. 

6.      There are times when Kasey needs to go to the bathroom immediately and she can sometimes take awhile (10-15 minutes is the usual time needed), sometimes 3 or 4 times a day. This is due to pancreatic insufficiency caused by CF.  Please allow her to go to the bathroom at any time and be aware of the length of time she needs. 

7.      We talk freely about CF (with discretion and sensitivity) with Kasey and everyone else. When the other kids (inevitably) ask about why Kasey takes medicine with her food we explain that “they are called enzymes and they help her digest her food because her tummy works different than ours.” (Why?) “Because that’s how she was born.” We consider these to be teachable moments to share information about how we are all different so feel free to use them as such. 

8.      We would be happy to come into the classroom to teach about CF if needed. This will cut down on the many questions about her medications and help Kasey’s peers accept her need for “special privileges.” Maybe we can work it in to your health education programming. Please let us know your thoughts about this. 

9.      Please let us know if you notice something out of the ordinary such as: excessive coughing, trouble keeping up with physical activity, frequent bathroom visits, or unusual thirst. Diabetes is a common secondary issue for those with CF. You may notice symptoms of a lung infection before we do because you are with her longer during the school day. 

10.  Kasey will have frequent doctor’s visits and possibly an extended hospital stay depending on how her health goes. We appreciate your flexibility in helping us make up missed work. We schedule clinic visits three months in advance and the appointments are very hard to change. Please let us know important dates for field trips, tests, etc. as soon as you have them. 

11.Even though Kasey might need some extra care at times, she is first and foremost a kid and wants to be treated like all of the other children in the class. Except for the mentioned items, she shouldn’t be treated differently.

The Cystic Fibrosis Foundation at www.CFF.org is a great reference for further information if you are interested. 
Thanks so much for caring for Kasey. If we work together, our hope is that Kasey will stay healthy enough for the much-anticipated cure. Please let us know if we can answer any questions. Lisa’s cell phone number is 425-891-2842. We look forward to a fun and healthy school year!

Sincerely,                                                                               Enzyme Dosing

Lisa Greene                                                                  Meals: ________________

                                                                                      Snacks: ________________

Lisa Greene

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