GI problems

[Guest guest]

Hi all hope everyone and their families are well. I know some from the group are going through hard times and you are all in my prayers. I need some advice.

My son is 3yrs old and has unspecified mito and FOD particularly SCAD. The question though is not about him. He has a brother (6yrs old, never tested) who has had stomach problems since he is 1yrs old. He would be doubled over in pain refluxing and this has been going on intermittently since he was one. Sometimes the refluxing could last a day some times two weeks. Everytime he has the pain they think it's his appendix and then they change there mind. Last time they said that the appendix was fine but there was inflammation in the areas around it, the ileum. We had an endoscopy, upper gi series and small bowel follow through. All were negative for blockage and reflux yet the endoscopy showed damage to the stomach and now after 5 months we had another endoscopy because he was complaining about his throat and it burning and there is now inflammation to his esophagus. All this time he has been on prevacid. Anyway he is very active, does karate 3x week, baseball for two teams, soccer, basketball and yet he continues to gain weight uncontrollably all while on a low fat diet that I keep him on due to his brother's condition. I'm getting a little annoyed at the doctor because he keeps asking me if he is doing it on purpose. I mean the kid can do it 30-50 times in a half hour. It got so bad that at school they kept the garbage pail and tissues and plastic baggies for him to spit it into near his desk. I don't believe he is doing it on purpose he is not getting anything out of it. He never misses school because of it, his grades are fine (straight A's with 97 average) I thought maybe I wasn't picking up on it so I asked the nurse and his teacher and they said get another doctor because there is no way he makes himself do it. The teacher and I have seen that he could be in the middle of a sentence and it just comes up in his mouth. Also, he has a stomach that looks like he is nine months pregnant. I am seeing the doctor tomorrow for the biopsy results and to talk what might be next because the prevacid is not working. Last week after the test he gave him pepcid to add at bedtime with the prevacid. I keep seeing all these people writing in with distended stomachs and reflux I am wondering if the doctor is missing something. I have told him about 's metabolic condition and he doesn't think 's is related. He gains 10-15 ponds a year and is 89 pounds at 6 (will be 7 in July) and yet it is all in his stomach. I know I'm rambling but anyone with suggestion, please help.

Tina

Mom to 3yrs, Mito/SCAD (untested) 6yrs