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Large Stomach I'm looking to see if anyone else or their kids are having the same problem as we are. My son mason is 2 and we have been battling a very large and hard stomach for the last year. he has had every test done that involves your digestive track and they think that he has lymph nodes in the stomach that are enlarged so therefore he has been on steroids for that last 6 months now and it depends on the day on what size his stomach is. some days it a little big but very soft usually when he has a lot of bm (bowel movements) other days its huge and he looks like the kids you see on the save the children shows with extremely large stomachs. i have switched the mik that he gets to the Silk (soy) and that seemed to help for a while but now nothing really seems to make a difference just wondering if any one else is having these issues i guess i'm becoming more concerned because my brother also had a large stomach when he was little and passed away when he was 3 due to a pneumonia infection this was in 1986 so not much was known about CGD then and they said he had a milk allergy and that was why he had a large stomach. not the case with mason 3 is creeping up on us and i'm worried i dont want his on the steroid much longer any insite would be great we go to our doc for the next check up fri the 20th for an ultrasound to look at his stomach and an echo so any questions or other things i may need to ask my doc to help get to the bottom of the problem would be great !!
Submitted by masonsmom on Thu, 2008-06-12 07:00. categories [ General Discussion ]
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 My brother had a very enlarged stomach due to fluid build-up which was a result of lymph nodes infected with a bateria called granulobater bethesdis. It is a new bug that is not widely known about in the world of CGD. It is a very slow moving bug in the terms of the patient wont get sick quickly but this was a symptom. Make sure you doctors look into it and for more information they should contact NIH, NIAID, Laboratory of Host Defesnes. I have had stomach problems all my life (I'm 50). They had said when I was little it was a dairy allergy also and I was taken off milk. That didn't help. I think I've had every test for it (or almost). I have severe constipation and am bloated like a save the children show also. If I wasn't so old people would think I was pregnant. I have recently started taking a probiotic (good bacteria) called Align. It seems to be helping somewhat. I also take the generic Reglan for digestion. I have problem eating and can only eat once a day usually. I do not digest normally. I had the test for that and I digest very slow. Does Mason have problem eating? Hope you are able to figure something out. Keep up updated. Karen He doesnt really have problems eating because of being on the steroid but it seems like he will go a couple of days without a bm and the he goes 4 ro 5 times in one day how well does the reglan help you digest does it regulate your bm's because on the day he decides to have all his bm's his stomach is soft but only for a couple of hours its like the second he eats or drinks something it gets large again i'm gonna talk with the doc about it about next friday he has an ultrasound that day so maybe his lymph nodes are still swollen who nows that for the response though take care amanda Those can also be symptoms of a gluten allergy (Celiac's) or a gluten "sensitivity." Gluten allergies can cause that pattern with bm's of none for a few days, and then frequent BM's because the small intestine isn't absorbing nutrients properly. They are often misdiagnosed as milk allergies, or overlooked in patients with other health problems. An elimination diet can help rule this out. Angela (Alistair's mom)
I will go a long time, 4-5 days without going also. Every time I eat my stomach gets larger which is why I don't eat but once a day and very little when I eat. It's also painful to eat. My stomach area always is in pain. Even with the Reglan I have to constantly fight it. Sometimes I have to add miralax to the regement, although not as much now that I have also added the align. I don't go 4-5 times in one day like Mason. I think it's just part of the CGD fun. I hope you have better luck than I have had in figuring it out. Karen |
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My son is 5 months old. He was diagnosed with CGD at 1.5 weeks old. I knew I carried this disease so that is how he was able to be diagnosed so early. Uriah developed something called NEC while he was in the NICU and the doctors didn't understand why he had developed this because it is usually found only in premature babies. Uriah was term and I read that your son is 2. Even though he is older see if he has been checked for this. Uriahs stomach swelled the size of a football, got hard, you could see every vein in his abdominal area. They didn't think he would make it through the night. My son is in the hospital now for a fungus infection, but is doing better. They are trying to get him home on home health. I hope you are able to find out what is wrong with you son.