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stomach irritations; reactions to meds? My son is eight and a half months old and hasn't gained weight for close to three months now. We've recently moved to the Atlanta area and are very pleased with the treatment down here. The treatment in Oregon is scary. After a series of tested they ran a scope down my sons throat and found that the bottom half of his stomach is rigid instead of smooth. This is causing him to half difficulty processing his food and passing it through his stomach. It has caused a decrease of appetite and vomiting. They originally thought it was granulomas or an infection, but the biopsies ruled out both of those. The doctors are calling them a mild irritation, and they're not sure what caused them. They're communicating with the NIH and are putting him on a low dose of steriods to try and clear them up. They've also placed a feeding tube down his nose to try and get his nutrition levels up. I'm wondering if his medications are causing this irritation and if anyone else has seen these reactions. He's currently on intraconazole, septra, and gamma. I appreciate all insight. Scott Sopousek (Quentin's dad)
Submitted by scottsopousek25 on Sat, 2007-04-14 15:10. categories [ General Discussion ]
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Karen I highly suggest you talk to the NIH. I communicate with a nurse practitioner there named Dianne Hilligoss. She's extremely friendly and does an excellent job of explaining things that the local doctors don't see that much. She described the irritations in Quentin's stomach as cgd colitas. I know I spelled that wrong, but she said cgd patients can develop thest throughout their GI system. They use very low doses of steroids to treat them. A lot of their patients are on the steroid indefinitley, and the dose is so small they don't see any negative effects. She said they've been doing this for over twenty years and have had success. I can't tell you to get a scope, but it seems odd that they haven't already. I would suggest you call Diane and get Dr. Malech involved in any decision you make. My doctors are great, but I won't let them do anything without consulting with the experts. They just haven't had the experience these people have. I've included Dianne's information below. You can tell her I told you to call and if she wants to tell you about Quentin she can. Email me if you have other questions. scottsopousek25@hotmail.com Dianne Hilligoss RN, MSN, CRNP Dhilligoss@niaid.nih.gov
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I have had stomach problems since I was young. I have had all kinds of tests with no results except food sits in my stomach and doesn't digest properly, it is very slow. Did the Dr. say why your son's stomach is rigid and not smooth? I am planning to mention this to my Dr. Monday. I have bloating and stomach pain all the time and I can't eat very much either. I would be interested to see what this problem is. I have had scopes but not to the stomach. I don't think its meds, in my case anyway as I had problem before I was diagnosed and started meds.
Thanks,
Karen