Tuesday, August 30, 2011

Letter to PreK Teachers about Cystic Fibrosis Care



Last year, I posted a letter to give to Peter's preschool teachers, and it received such a good response, I thought I would post the updated letter we used this year before Peter started Georgia PreK. (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.

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 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 children his age and is excited about going to PreK. 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!

Thank you,

Marchet and Jacob Butler

Eating

Peter does not have any food allergies that we know of, but before he eats, 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. The only exception is water, fruit, juice, or treats that have only simple sugars in them.

Right before a meal, open 3 capsules of Zenpep on applesauce or other fruit sauce. Stir them in a bit and have Peter eat the applesauce and enzymes. He should swallow the Zenpep “beads” without crushing them. 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. We are happy to provide applesauce for Peter’s medicine.

Please make sure he washes his hands before he eats and wash and sanitize any surface he eats off of. At mealtime, 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. Because of this, whole milk and butter (and cheese if appropriate) should be included in every meal. Also, dipping sauces, gravies, and mayonnaise are a great way to add extra calories to his diet. I can also provide Carnation Instant Breakfast mix for his whole milk. 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. We appreciate your strict sickness policy; that will especially help Peter stay as healthy as he can through the school year.

When doing activities with shared scissors, glue, markers, etc., please ask Peter to sanitize his 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.

Bathroom

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. If Peter complains that his stomach really hurts, it is usually because he needs to go to the bathroom, and sometimes he needs to be reminded of that.

Vomiting

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. 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.

Hydration

Peter loves to be physically active. In fact, exercise is one of the best ways to keep Peter’s lungs healthy, and we try to exercise everyday. 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 bottle nearby.

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.

Tardiness

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 up to an hour each morning to complete his medication and treatment regime and that may increase if he has a lung infection or cold.

Absences

Peter may be absent due to illness more than other children. He also has frequent doctor’s appointments as well as quarterly CF clinic visits.

Coughing

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).

Inhaler

If Peter has a cough or labored breathing, we may ask you to administer inhaled Albuterol at school. We will provide instructions if this treatment is necessary.

Sinus Rinse/Nasal Steroid

Peter has chronic sinusitis due to CF, especially in the winter. We frequently use sinus rinses and a nasal steroid to help clear out the mucus so he can breathe. If this becomes necessary, we will provide instructions for administering this treatment.

3 comments:

  1. Thanks for sharing! That is an excellent letter! our daugher (cfer) is 2.5 and this will be very useful when she starts Pre-K. Love it!!! Hope he has a great year!
    mommyformadeline.blogspot.com

    ReplyDelete
  2. Awesome letter! I am visiting a preschool for my little Cfer tomorrow and this will give me a great guide to explain CF in simple terms! I am nervous because the centre sounded very wary of CF, so thank you for sharing! Hope Peter has a great year!

    ReplyDelete
  3. Thank you! Last year, our CF clinic sent us a "Taking CF to School" pamphlet to give to the school. But I thought, "There is no way they will read all of this." That's why I made this letter. It's been a great way to get teachers and administrators on board.

    ReplyDelete

LinkWithin

Related Posts with Thumbnails