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.

Q&A: How Often Should you do Sinus Rinses on a Baby or Young Child?

I'm continuing the Q&A feature on this blog. If you have a question you would like me to answer, please contact me through our contact page.

Question:
My son is 6 months old and was diagnosed at birth with cf. I plan to get a [sinus rinse] bottle and use it for future congestion. My question is, would you use it on him twice a day as a preventive measure or only when congestion comes on? He doesn't have daily congestion and I only do cpt [chest physical therapy] for airway clearance. it is really just when he is sick that he has congestion, which has only been once now, but it was a bad one. His older brother and sister do have very bad allergies also, which he may end up having. Thanks for the help.

Nicole

Answer:
Dear Nicole,

I can only answer from my experience, since I am not a doctor.

The answer to your question is (in my opinion) is: it depends. Some kids with CF struggle with sinus issues and then others have major digestion issues. There are those with CF who don't have as many digestion issues, but the lungs are a primary concern. In our case, Peter's sinuses have been one of the most prevalent complications of his CF. (Peter was diagnosed at a year and a half. Shortly after that, his chronic sinus problems prompted our CF doctors to refer him to an ENT.)
NeilMed Sinus Rinse Saline Nasal Rinse, Premixed Packets
So, I would talk to your CF specialists about their recommendations for using a sinus rinse. If your little one doesn't have a lot of sinus concerns, they may recommend just sticking with the CPT without a sinus rinse. Or they may recommend using a rinse on occasion. If it were me, I would (at minimum) use sinus rinses when your son is congested from sickness or allergies as a way to clean out those passages. As to the frequency, it really depends on your doctors' recommendation and how much mucus and discharge you are getting out of the sinus rinse.

For Peter, we do sinus rinses1-2 times a day as his ENT recommends. We increase that when Peter is sick, congested, struggling to breathe (in the sinuses), or just sounds "snotty." I can tell Peter needs to do more sinus rinses in the day if the rinse dislodges more than a few small boogers. (Sorry, guys. I have to be kind of gross now.) If we get a stream of snot and mucus (yes, it can be that bad), we know Peter is really clogged up and his sinuses need more frequent cleaning out during the day. We have done up to 5 or 6 rinses a day when Peter is really ill. Peter is getting to know his own sinuses and acknowledges when he needs to "do his nose," so that's also really helped.

For my husband and myself, we do sinus rinses when we are sick or have allergies. The nose is really the first line of defense when it comes to sickness, so when I feel congestion coming on, I go for the sinus rinse. I know your older two would probably benefit from sinus rinses as well!

You can read more about sinus rinses on my previous Q&A post: http://peterspavementpounders.blogspot.com/2011/08/q-can-i-do-sinus-rinses-on-baby.html

Tuesday, August 23, 2011

Q&A: Can I Do Sinus Rinses on a Baby?

I'm going to start a Q&A feature on this blog. If you have a question you would like me to answer, please contact me through our contact page.

Question: 
A friend of mine recently asked me advice about doing sinus rinses on a six-month-old child who has CF. Here's what she wrote: This child has lots of allergies and will benefit greatly at some point with the sinus rinses. Can you tell me when you start sinus rinses with Peter and how did you teach him to do them?

Answer:
Disclaimer: I am not a doctor. Before starting sinus rinses, it's important to check with your child's doctor to make sure it's okay. NeilMed does not recommend sinus rinses on children younger than 4 years, but Peter's ENT had us start right away with sinus rinses when he was one.

Here's my experience:

You can do sinus rinses on babies. I'm pretty sure this CFer would be fine starting right away with approval of your doctor. Whenever the child is getting stuffy, it's a good time to do a sinus rinse. The child may not like them for the few moments you do them, but afterwards, they can breathe, and that little bit of discomfort is worth it.

I don't use nose suckers or other fancy nose gadgets. For a kid with sinus issues, they are basically useless. We make mucus in all parts of the sinuses, and no nasal spray, aspirator, or syringe or is going to clean them out as well as a sinus rinse.

NeilMed Sinus Rinse Saline Nasal Rinse, Premixed PacketsWe use the NeilMed sinus rinse bottle, available at nearly any pharmacy and also online. They do make a pediatric version which has a smaller hole in the top and holds less solution, but you have to order it online. I would start with the adult bottle since you can get it easily. If it is too big, you can order a pediatric size. You can get deals on the bottles if you fan them on Facebook.
The sinus rinse bottle kit comes with packets of sinus rinse mixtures. We also use a homemade solution that our ENT gave us, and sometimes use generic sinus rinse packets from the pharmacy. (Sometimes you have to ask where they are. My pharmacy keeps them behind the counter. No idea why.) 

Either way (with packets or homemade solutions), you can dilute it down a bit for a baby or someone who is more sensitive to the solution. We mix up the solution with distilled water (new research shows it's dangerous to use tap water.) How do you know if a solution is too strong? Try it on yourself! If your nose burns from the mixture, it's too strong. (And then wash and sterilize the bottle before you use it on the baby.) 

Here's how we got Peter to do his sinus rinses when he was little. You can also see a video of it here
  1. To avoid flailing arms, wrap the baby's chest and arms in a towel. 
  2. Lean them over the sink and squeeze the solution very gently into one nostril. The solution will come out the other nostril with mucus and snot. Repeat until the solution runs clear.
  3. Repeat on the other nostril.
  4. Tilt the baby from side to side and forward to get the remaining solution out.
  5. Wipe nose with tissue.
  6. Cheer and clap! Yay, they did it!
  7. Dump out remaining solution and wash bottle. (Hint: the black top can be removed from the tube. That makes cleaning a lot easier.)
  8. Wash and then sterilize the bottle (directions for sterilizing here:  http://www.neilmed.com/usa/directions.php)
As Peter got older, I taught him to blow out the rest of the solution into the sink or a tissue, and he doesn't need the towel now or tilting from side to side. Peter doesn't necessarily like "doing his nose," but I really feel it's as important as brushing his teeth, and he has not had to have sinus surgery since we started the rinses. We do sinus rinses 1-2 times a day, no matter what. We do more rinses when Peter is stuffy from a cold or allergies.

Here's a few pictures of Peter doing his sinus rinse by himself. He doesn't always do it alone, but he knows how, and we're so proud of him!





Finally, please tell your friend that if chronic sinusitis (constant nose and sinus infections) is a problem, they will probably benefit from seeing a pediatric ENT, especially one that is familiar with cystic fibrosis. Also, since the child has allergies, I would make sure they are under the care of an allergy specialist. (We CF families love our medical specialists!)

Thanks for the question!

Marchet, mom to Peter who has CF and chronic sinusitis

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