New Member with Question about Hormones/CF

[VMillSM4L]

Hi,
I'm new to this forum, and wanted to say hello.

Also, I have a question for CF parents.
I am the stepmother of an 11yr old, with CF (G542x)
For the longest time, we never had an issue with any of his treatments or medications, but lately, he's been getting moody and unwilling to take CPTs & Nebs without a battle. He whines about how he "isn't coughing" and he's "Fine" or "Doesn't feel like it". When we force him, he blows up. I can understand he doesn't want to do it everyday, I wouldn't want to either. We've even scheduled them right when he wakes up, and before bedtime. (When the day hasn't started yet, and is over.)
He takes two 15 min. treatments (15min hypertonic and 15min pulmozyne) twice a day (one hour total). He's been reduced to Pulmicort and Albuteral inhalers, so no longer takes them as nebs. He takes his pills without an issue. The problem only comes with his breathing treatments.

He is also getting ridiculously picky on what foods he eats. He is currently on the "Scandi Shake" diet with Benecalorie supplements added in as well. (2-3 a day) He drinks them without an issue. But meals, no matter what is prepared, its a never ending battle. Snacks, obviously aren't an issue. (But we have to monitor the "sugar" snacks carefully as he is on the "see-saw" for CFRD. We were just recommended to substitute regular snacks with sugar-free, or natural sugars. He's not in the danger zone yet, but enough to monitor his sugar intake.)
He hasn't had this issue before. Does this come with age? Is he just being "moody"? Could this be a sign of hormone changes?
His weight gain is on the low chart levels, but he isn't "losing" weight. Just gaining 1lb to a few 100g every few weeks. Don't get me wrong, he EATS but now, for some reason, it's a battle. "Gross" "I don't Like that", etc. etc. then he cries. (Ironically, he'll ask for seconds and thirds on the very same meal he argued about! )

Is there anything I can do to ease these tantrums? Is it hormones? His CF team can't see anything "clinically" wrong as his weight gain is slow yet steady, and have considered toying with his enzyme intake to see if they can figure out the "slow weight gain" .

:/

Thank you guys.
-VMillSM4L

 

[Printer]

At age 11, he is beginning to feel some independence. It will clear up in a few years!!!!!!

Bill

 

[nmw0615]

When I started to push back against my parents, they decided to give me a certain number of treatments I had to do a week. If I had a total of 14 treatments to do each week, I had to do 11. I could pick which ones I missed and which ones I did, but I had to do 11. I also got control of the TV remote when I did my treatments. For those 20-30 minutes, I got to chose what was on the TV and everyone else either had to watch it or leave. That was my biggest motivator in doing treatments at that age.

 

[VMillSM4L]

When I started to push back against my parents, they decided to give me a certain number of treatments I had to do a week. If I had a total of 14 treatments to do each week, I had to do 11. I could pick which ones I missed and which ones I did, but I had to do 11. I also got control of the TV remote when I did my treatments. For those 20-30 minutes, I got to chose what was on the TV and everyone else either had to watch it or leave. That was my biggest motivator in doing treatments at that age.

We do the TV control, and have even offered up the xBox as collateral, too. lol. The Xbox works MOST of the time, TV? Half the time, the rest of the time, its "NO!". Maybe I can talk to his Pulmonologist on Tuesday if I can change his schedules to where its not overwhelming for him, like 11 sounds great. Cutting out even that much may get him to relax some. Thanks!

At age 11, he is beginning to feel some independence. It will clear up in a few years!!!!!!

Bill

I've been hoping it was age. It was a sudden behavior change, from no problem to constant battle. Then again, I guess I probably didn't want to get told what to do at 11 either. Thankyou Bill!

 

[VMillSM4L]

UPDATE:
We finally got over the "pickiness" with his food. (Thank goodness!)
In the beginning of August, my son and I spent a lovely 72 hours at All Children's for a fecal study(BATHROOM) to test his absorption levels due to not gaining weight fast enough. Had to provide food diary from the last 2 weeks, and continued the diary while he was in the hospital. He consumes a hefty 3,000-4,000 calories/ day. Which his nutritionist thinks is fantastic.
Watched him gain weight right in the hospital. (Almost 4lbs!) Came to an at-the-moment conclusion that my boy running up walls and across ceilings were burning just enough calories to "maintain" weight, but not gain it, so we upped his calories an additional 1,000cal /day. It seems sitting in the hospital bed, playing video games all day and stuffing his face silly was just what we needed to see! We will get the results of the absorption at the next CF Clinic.

Has anyone else faced this issue, too? Overly active? Does anyone have any recommendations on what I can add to his diet? Getting the calories in do not seem to be a problem, it's adjusting for that extra boost so he can stay active and have left over calories to build on. Any recommendations? His nutritionist suggested "CLIF" bars. (We're still picking and choosing flavors, he hasn't settled on any particular one, yet.) and new ideas for the use of his scandi shakes.

 

[Justinsmama]

Hi,

My soon to be 9 year old boy is completely p/i. Creon has changed his life, but he too is part monkey and always on the move. He is a dancer (ballet, tap and jazz since 2 and just won a local award) and withhis crazy dance schedule over the summer, he has not gained any weight. What I have done (and I am not sure it is the best, just what I have done) is make muffins for breakfast and give him a milkshake or ice cream every day. We still are only maintaining now, but up 15 pounds over the last 2 years. Good luck to you.

 

[VMillSM4L]

Hi,

My soon to be 9 year old boy is completely p/i. Creon has changed his life, but he too is part monkey and always on the move. He is a dancer (ballet, tap and jazz since 2 and just won a local award) and withhis crazy dance schedule over the summer, he has not gained any weight. What I have done (and I am not sure it is the best, just what I have done) is make muffins for breakfast and give him a milkshake or ice cream every day. We still are only maintaining now, but up 15 pounds over the last 2 years. Good luck to you.

A dancer! That is fantastic and congratulations on the award. My son wants to start football this year. He has one heck of an arm! Thank you for your tips on the muffins, I honestly hadn't thought about them. We are big on pancakes and eggs. We turn his scandi-shakes into actual ice cream shakes with vanilla ice cream, some whole milk, in a blender. He loves them. Have you tried the Benecalories by Nestle yet? They mix very well in milk or any dairy product, and they are tasteless. We have also started the Duocal supplement. You can cook with it. It's a powder supplement. The calories are low considering how much you actually have to use to make a difference (in my opinion, at least).

 

[scarecrow]

If it comes down to a choice between gaining weight and physical activity I would choose physical activity every time. Weight will sort itself out if you are eating good quality food but every day that you don't get any exercise is a day that you can never get back.