3 Year Old Just Diagnosed - Help!

[Kirio]

My son was diagnosed at birth last year. His three year old sister was recently tested and has CF as well.

She has been a picky eater from birth. She is not underweight and her vitamin levels are all good, though she is severely pancreatic insufficient. She refuses to take her enzymes (the answer to everything is "no" these days) and she doesn't eat anything we can hide them in (mostly hard foods or dairy products) and she chews everything.

She is, thankfully, willing to do her breathing treatments, but it's killing me that I can't get her to take her enzymes.

Does anyone have any advice? Our medical team says this is the worst age for a diagnosis in terms of compliance. Any help/ideas would be greatly appreciated!!

 

[peter]

Welcome. You've come to the right place. Many will be answering you shortly. This site has been here since 1996. We'd love to know how you landed here? With all the advice and information you'll find here, don't think your experiences aren't of interest to everyone here as well. Besides your questions please feel free to tell us what you learn from those experiences as well. Most would like to know what CF center you go to. Often times that too has relevance.

 

[Aboveallislove]

Welcome mom! Here is a link to what worked and works for us. Ellyn Satter has saved us on three separate issues...eating issues, enzymes,and then a phobic food aversion.. She really knows her stuff. This approach actually can work better at the thre year of age too since they understand language better. It s really hard to do for the first week but it does work. Pm me if you want to talk though pre or just need some mNRA support while doing it, if you decide to. http://ellynsatterinstitute.org/fmf/fmf58.php

 

[Aboveallislove]

The should be moral support...

 

[ethan508]

Before I could swallow pills whole (pre-2[SUP]nd[/SUP] grade), my mom would mix pills in my applesauce or put them in one corner of my sandwich. I know I chewed some because the thought of biting into an enzyme is a vivid memory that still makes me pucker. To this day I can't eat anything with sprinkles because it reminds me of the awful taste/texture of my pill laced lunches.

 

[Printer]

What is the issue with her not taking enzymes? Does she experience stomach pain/aches after eating? If her weight and vitamin levels are good she may function well without any enzymes.

Bill

 

[Kirio]

Thank you so much for the quick responses! I am going to look at the Ellyn Satter site now.

We are in Mississippi and, thankfully, live near the only recognized CF Center in the state - UMMC. The folks there are great, and were being supportive of our enzyme failure when they agreed that age three is really tough!

I found this site by googling CF forums. I don't know anyone personally that has kids with CF and as much as I like and respect our medical team, it's just not the same as personal experience!

Thanks again!

 

[Ratatosk]

DS has been on enzymes since he was a week or so old, so he really didn't give us issues. He was/is a picky eater and from time to time he'd refuse enzymes, but those were times he was usually hungry, so his choice if he wanted to eat was to take the enzymes. Usually sprinkled on a spoonful of baby food bananas.

I wouldn't suggest hiding any medication in a food or drink. We were warned about doing that with vitamin drops, that ds would associate the food with the different taste. To this day a friend of mines son won't drink milk and daughter won't drink juice because they tried hiding adeks in it.

 

[Kirio]

Bill,
She took them the first day or two in applesauce or yogurt, but she chewed them and her mouth started to hurt. Now she won't go near applesauce, yogurt, or anything with sprinkles. She has never seemed to have any stomach pain and is growing well and gaining weight.

 

[Ratatosk]

I suppose you could try getting her to swallow pills. I think ds was around that age when we started working with him doing that.

 

[Aboveallislove]

Bill,
She took them the first day or two in applesauce or yogurt, but she chewed them and her mouth started to hurt. Now she won't go near applesauce, yogurt, or anything with sprinkles. She has never seemed to have any stomach pain and is growing well and gaining weight.

Hey, first, the enzymes are NASTY tasting and can burn, so it is completely understandable. Our son refuses to take an enzyme where it is broken for that reason. Given that backdrop a couple more thoughts: You could try doing them whole and show her how (you can empty it out before and then just say "here put this on your tongue" and swallow, watch mommy." I kinda like that approach since we can't get our son to swallow whole and you can skip that step! And she likely won't associate the taste with the tiny pill. Or, coming from the Satter approach, before doing explain to her that the medicine needs to just be swallowed without chewing on the applesauce and that that was why it hurt her mouth, but she needs to take it and she can just rinse it down with milk or water. Then follow the rest of the approach. Also, there is a swallow reflex that is triggered by a burst of wind in the face so after she has it in her mouth you could do a quick big blow in her face (assuming you don't have a cold, of course), and it will trigger the swallow reflex. (A nurse in the hospital taught me that). I wonder though from what you said if going straight to the pills would be best. Also, Bill is right that maybe she isn't PI--did they test or do they know from the mutations??? Good luck!

 

[Printer]

Kirio:

She may not need enzymes. Are you seeing a CF Specialist at the CF Center?

Bill

 

[Kirio]

Kirio:

She may not need enzymes. Are you seeing a CF Specialist at the CF Center?

Bill

We are. Her fecal elastase test came back severely pancreatic insufficient. The CF diagnosis and PI were a big surprise at the clinic because she is so healthy (though they discovered some lung issues). We've been told she needs to do the enzymes despite all her blood work coming back with excellent levels. I have to confess that I don't really understand why.

 

[Ratatosk]

Could be issues with weight. Correlation between maintaining good BMI and Lung Function.

Could be potential for blockage if she's pancreatic insufficient and has loose, malabsorbed stools.

 

[Rebjane]

My daughter has been taking her enzymes since she was a newborn. At about 2 years old she started swallowing her enzymes whole(not opening them up). One day I noticed she would swallow peanuts whole(yes i know not good) but if she was 2 and could swallow a peanut then she could swallow her enzymes. Try making the pill issue positive not a power struggle. Positive reinforcement, reward systems are great. For example, when my daughter was about 4 she kept climbing into bed with us in the middle of the night. Basically, my husband said if she stopped he would buy her a Doll she really wanted(the kind you feed and it wets it's pants ug) But it worked..We always make it very matter of fact; the things she has to do for her health. Like brushing her teeth. She'll get there. Be patient.

 

[Printer]

OK, as someone who went from 0% PI to 100% PI, I gave you my best opinion. It is not, however, as informed as some "Moms".

Good luck.

Bill

 

[Ratatosk]

My daughter has been taking her enzymes since she was a newborn. At about 2 years old she started swallowing her enzymes whole(not opening them up). One day I noticed she would swallow peanuts whole(yes i know not good) but if she was 2 and could swallow a peanut then she could swallow her enzymes.

Ugh DS STILL does that and claims they reassemble in his digestive system. I'm forever reminding him to chew peanuts and sunflower seeds.

 

[Jennyvb17]

I'm another one raised on applesauce.

maybe try ice cream? And tell her not to chew it, take small bits of the food and swallow

 

[TreasureGoddess]

My son was very picky also, we went through a lot of foods adding the "sprinkles" of opening the enzyme capsules. I used only the best things and he only got them if he sucked & swallowed. We started with applesauce as many do, but the texture was funky. We went to jelly packets (like you get at diners) grape, strawberry etc. He was around 3 at this age and liked to have the little packets, it just WOULD NOT DO to have a spoonful of jelly from a jar. I know, but I figured I'd pick my battles. The ultimate was when we went to frosting. Chocolate whipped frosting in those tubs from the grocery store. I carried around little baggies of some squooshed icing and then would load up the spoon, involve him in the "fun" of sprinkling on the enzymes and then he thought it was a real treat (plus it got him extra calories and fat).

Around 4 years old we started practicing swallowing pills by swallowing nerds candies whole, then moved up to mini m&m's (my goodness I packed a lot of candy into this kid while he was learning to take enzymes), then real sized m&m's. It was a fun project and he only got to practice if he was REALLY GOOD, you know the drill, build up the fun and make it a challenge. By the time Joe was 5 he was swallowing handfuls of pills at a time to loud applause of the family. Now he's 15 and can swallow his whole morning pills plus 7 enzymes at once and so quickly and quietly half the time I don't even see him. He takes his own enzymes at school (high school) and you can't even tell unless you're watching him every minute. A quick, slip of the hand and bam, 7 enzymes gone.

It will get better, hang in there mom! Also, make sure she swishes out her mouth after eating really good (she can even make noises in the bathroom if she wants like gargling) and that will get out any broken chewed parts of the enzymes. If they stay in the mouth it can cause sores, which may have been the problem.

 

[Ank]

U can open creon capsule and it to food ..mix it with food...grains should not chewed