Wednesday, August 25, 2010

Letter to Preschool Teachers about Cystic Fibrosis Care

This week, we start a one-day-a-week preschool for our little CFer. At the open house a week ago, I gave the teachers a guide to caring for Peter. (I borrowed much of it from Lisa C. Greene's excellent Letter to Teachers about My Child's Special Needs). Feel free to use and adapt my version. I was able to fit it onto the front and back of one sheet of paper. It had a very positive response.

Dear Teachers:

Peter has cystic fibrosis (CF), a life-shortening genetic disease that clogs his lungs, digestive system, and sinuses with thick sticky mucus. CF is not contagious and does not affect Peter’s mental or emotional abilities. However, some accommodations are necessary to keep Peter as healthy as possible while in your care. Although Peter has a serious health condition, he acts like any other child his age and is excited about going to preschool. We try to keep life as normal as possible. Let us know if there is any other information we can provide to make his time with you a positive experience!

Marchet and Jacob Butler

Peter does not have any food allergies that we know of, but before he eats anything other than water, fruit, juice, or treats that have only simple sugars in them, he must have medicine. His body can’t digest proteins, fats, starches or complex carbohydrates on its own. So, he takes pancreatic enzyme supplements (Zenpep) to help his body digest his food.

For a meal, open 3 capsules of Zenpep on applesauce or other fruit sauce. Stir them in a bit and spoon-feed them to Peter. He should swallow the Zenpep “beads” without crushing them. (Peter sometimes has to be reminded of this.) For a snack, he only needs 2 capsules of Zenpep. The medicine works for about an hour, so if it has been an hour since he has eaten last, he will need more Zenpep before he eats again.

Peter sometimes has a hard time swallowing his medicine. Try one or two beads in the applesauce at first, then give him extra applesauce to wash it down. Continue until all the beads have been swallowed. Sometimes offering a sticker or a little toy helps motivate Peter to take his enzymes.

Please make sure he washes his hands before he eats and wash and sanitize any surface he eats off of. At lunchtime, please allow Peter enough time to eat all of his food (or encourage him to eat all of it). Kids with CF have a high calorie, high fat diet due to the body’s decreased ability to digest food. He may need to have extra snacks if he starts losing weight.

Hand Hygiene
Frequent hand washing is critical because it is the best way to prevent colds. A cold can turn into a lung infection for Peter, which might require hospitalization. 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 enforce your sickness policy.

When doing activities with shared scissors, glue, markers, etc., please sanitize Peter’s hands after the activity is over. The reason for this is to reduce his odds of contacting a cold or virus from other children especially during flu season. If infection becomes a problem, we can provide his own set of craft supplies.

Peter may require more frequent bathroom breaks or may express a sudden need to use the restroom. This is due to the digestion issues with CF. He is potty-trained and will tell you if he needs to go to the bathroom other than the scheduled bathroom time.

On rare occasion, Peter vomits when his stomach has to get rid of the mucus that has built up there. He generally will start crying and gripping his stomach like he is in pain right before he throws up. He sometimes can make it to the bathroom in time, but having a bowl on hand would be a good idea. If Peter vomits, he is usually just fine right after he has washed out his mouth with a little water. Unless accompanied by a fever or other symptoms, vomiting does not mean Peter is sick.

Helping Classmates Understand CF
It's okay to let my Peter’s classmates know about his CF as long as it is done in an appropriate way:
  • “Peter has to take his applesauce and enzymes to help his body use the food he eats.”
  • “Peter has to cough to keep his lungs healthy. It helps get the yucky stuff out.”
  • “Peter has something called CF. He was born with it. You can’t get CF from being around him or playing with him.”
Please do not tell the children or Peter that he is going to die of CF. We do not know what the future holds for our little boy or for the treatment of CF. We hope someday there will be a cure. We would also be happy to come into the classroom to teach about CF if needed.

Peter may come in late on occasion due to morning respiratory treatments and medication. We will do our best to make sure he is on time. However, it takes an hour and a half each morning to complete his medication and treatment regime and that may increase if he has a lung infection or cold.

Currently, Peter is not having coughing issues. However, as CF progresses, Peter may cough frequently; it is his body’s natural method to clear his lungs of mucus. The cough is not infectious. Peter should not be asked to suppress coughing or stop coughing. He should be directed to cover his cough into his elbow or tissue (not his hands).

During physical exercise, please make sure Peter gets plenty of fluids. CF causes him to sweat more, so dehydration can be an issue. We would appreciate it if he could keep a water sippy nearby. Using communal water fountains is not advisable.


  1. Thanks for sharing the letter to your sons preschool. My son will start preschool on a part time basis in August & I have been trying to organize my thoughts about what information the teachers will need. Your post was a big help.

  2. Thank you so much. That's the reason I posted it!



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