Just a brief update on the Breakfast Club plan.
WEEK 1: FAIL
Last Friday night we started Austin on the new medication that was supposed to jump start his appetite. Twelve hours later we had a mess on our hands. The medication made him depressed and well, just sad looking. He was non-talkative, just sat in his room and didn't want to interact with anyone. He cried at the drop of a hat and just was not at all his gregarious self. He did eat a tiny bit for the first two days, but then his motility slowed to a crawl and getting his formula or oral feeds into him became a battle. In addition to that the medication also dried up his trach secretions so they became thicker and that is never a good thing.
He took the med for four days total over the holiday weekend. On the fifth day, I called the Breakfast Club team leader and let her know of his troubles. Just as I suspected, said take him off the medication effective immediately. If we were going to see any positive results they would have shown the first day or so and the negative effects far outweighed any gains he was making. Luckily it is a short acting medication so the following day he was back to normal -- sort of. His motility continues to be an issue. UGH.
So the quick medication fix we were really hoping would help is a bust. There is one other medication, but they will not use it on him because it is a steroid and likely his reaction will be worse than this. At least we tried and no we know what won't work. Medication.
So it looks like Austin will need to do this "eating thing" the old fashioned way, by learning to love it. Enter a new Food Revolution.
Thanks for peeking,
5 Peekers:
I'm sorry to hear that didn't work for you! :(
Aw! Sorry it didn't work. Ya know, I think if he has the ability to eat, the desire to eat will eventually come. Especially when he's older and peer pressure starts to kick in at school and birthday parties and such. Little kids sometimes just find it so inconvenient to stop playing and sit down and eat and why would you when you have a convenient tube that mommy handles!
I once saw a 19-20 year old kid here at the children's hospital in the GI department and he was hanging out and joking with the receptionists. I thought he was one of their kids or something, but I listened in (I know, bad!) and he was a patient and he had a tube. And they were joking about him going off to college and putting beer in his tube (he didn't really as far as I could tell LOL). It was just interesting to see this very funny, charming, well-liked kid being so open about his tube. He was so *normal*. I don't know why he had the tube of course, but even if it was a permanant thing, he didn't let it stop him from doing his own thing.
Anyway, the point of my story is whether he eats or doesn't he'll be a heartbreaker!
Goodness, that medication doesn't sound good at all. Poor guy! I hope that Austin will be able to gain a good appetite soon on his own.
I'm sorry you didn't have better success with the medications. Hugs.
I'm sorry the meds didnt' work, but think! That's one less med you have to take:) Austin will do things in his time--as hard as that is to accept.
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