I feel like I am the only one that posts on this board, but I have no faith in our CF Clinic so it's the one place I can come to and feel like everyone is on the same wave length that I am. Here is a summary and if anyone has suggestions fire away:
Our daughter is almost 10 years old with CF. She has always had a terrible appetite and has always been a very picky eater. We started GSH 3 years ago this December. After 4 months, we started to notice her gaining weight and eating more. Not incredibly, but so much better and we were able to back off of pressuring her to eat. The best part was watching her climb up the weight chart and reaching close to 60 percentile. In the last 3 months, things have changed. She has battled diarrhea 3 times in the last 2 months and her appetite has been horrendous. The only things that we have added to her treatment schedule is 28 days of Tobi but still taking oral GSH. We did not do the inhaled during that time. Her latest culture showed some yeast(which the CF clinic said not to worry about and they ignored my questions as to why). And they don't want to give us a stool test kit because they would prefer to send us to the GI instead who never helps at all. The only other change was 3 months ago we had an expander put in her mouth to prevent her from having a jaw problem that is hereditary (my husband had to have orthonathic surgery to correct it). This has hendered her in that foods she normally likes are now harder to chew, etc... Well, I could understand if it was jsut that, but she isn't hungry. We had a gastric emptying study done 2 weeks ago-NORMAL. Here are the meds she is on:
7 Creon 10 with meals (just increased from 6 due to malabsorption)
We stopped the oral GSH because we felt like if she is having a yeast problem, that it might exasperate it more.
Zithromax 3 times a week
600 mg. of NAC
Primal Defense Probiotic (started this about 5 days ago).
Prilosec
Periactin (to help with appetite)
2 ABDEK gels

We can't figure out what we are missing b/c we have made several changes all at once. Stopped the oral GSH, added probiotic, increased enzymes.

She eats horrible. No veggies, barely any fruits and mostly fatty foods like mac and cheese, pizza, fried foods. That is all she will eat. She used to eat green pepper, lettuce, and a few others, but no longer likes any of it. HELP!!!

I thought the oral GSH would help with all of this and it did for 2 years, but now it doesn't seem to be helping. We stopped it about 5 days and her last two stools were normal. What the heck is going on? We are bewildered...nature of the beast (CF). Anyway, so many of you are on other supplements...any you think might help? Think the oral GSH would aggravate a yeast overgrowth? Thanks