Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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Terrible GI problems in young CF babies

deleted_user
deleted_user
I have two young boys with Cystic Fibrosis. My two year old was diagnosed at two months and my 3 months old at three weeks. My two year old went through Pyloric Stenosis at two months. Does anyone know if that even is common is children with CF? Also my three month old has had a lot of GI problems from the start. He started off with bad reflux then eventually had a Nissen and a G-tube put in. He has been in the hospital a month out of his three months of his life. He isn't gaining weight very quickly at all. He is three months and only weighs 8 oz above his birth weight. When will it get better? It seems as if he is wasting away. His skin is so flabby like there is no meat at all. My two year old is doing great. Is all the reflux etc common? Did anyone have similar problems?
deleted_user
deleted_user
Hi there! My name is Noel. Reflux is very common in CFers, or so my daughters doc says.
Did your son have surgery for the pyloric stenosis? Meconeum Ileus is common ay birth, I think like 20% if CFer's have that, I don't know about the pyloric stenosis. The pyloris is the narrow passage connecting the stomach with the small intestine and stenosis means abnormal narrowing. How is he, now?
~hugsnkisses
deleted_user
deleted_user
Thanks Noel. Yes my two year old had surgery for the Pyloric Stenosis. I knew what it was I was just wondering how common all this was with CFers. He also had Medoneum Ileus, they both did. My two year old is great but my younger one is having all the problems right now. Doesn't seem like much is working. I was wondering if anyone else had problems with their little ones like this.
deleted_user
deleted_user
I have bad reflux. Hope they get better soon. My 1st cousin and I both have cf. I am the oldest 2 years apart. We hang out alot.
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