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GI disorders


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  #1  
August 28th, 2011, 10:46 AM
alicenwonderland's Avatar Platinum Supermommy
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Hello! I guess i'm new here. My name is Alice, and my 11 month old son is Theodore. We call him Teddy though. He is not yet formally diagnosed, but has problems digesting just about everything. At 11 months old, the only food he can tolerate is rice, and even then, it depends on the variety. He gets all of his nutrition from his Neocate. Any time he tries a new food he either vomits, gets bloody diarrhea, hives, or a combination of everything. When tested for food allergies he blew positive only for peanut, and mildly for corn. He's never eaten either of those, so thats not the problem. His doctors thought he would grow out of this, but so far no dice. So far we're toying with the idea that it might be FPIES or EoE.

Anyone else dealing with GI disorders?

Looking forward to meeting all of you as we figure out whats going on.
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  #2  
August 28th, 2011, 06:04 PM
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Hi! He's a cutie! My daughter is followed by a GI for chronic constipation, we're still in talks about whether we're going to pursue tests to find out why (I dont want to but doc does). That sounds terrible that he can't eat anything without being sick. We don't follow a certain diet (I know another mom on this board does, but it's nightshade free so I'm not sure how (if at all) similar it is to either the ones you're considering)
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  #3  
August 29th, 2011, 06:48 PM
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Hi there! My DD has EoE and EoC, which is common in kids with Mitochondrial disease. She's tube fed peptamin Jr, but we might be switching to Elacare. She's even had some time off intestinal feeds and on TPN only. Welcome to the SN board!

Has your l/o had any biopsies done yet?
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  #4  
August 30th, 2011, 06:08 AM
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no not yet. I'm curious what will happen at his 1 yr appt. At the moment he is symptom free on an elemental diet. But he's still has no foods. I'm guessing we'll have to introduce an irritant before scoping.... i'm terrifed of that. So far he's drinking everything he needs. I'm hoping that continues!
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  #5  
August 30th, 2011, 06:34 AM
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If your l/o does test positive for EoE, I'd call your local children's hosp and see if there is an Eosinophilic Esophagitis clinic. Or even a GI Dr that specializes in these disorders. I'm so glad he's taking his formula orally. I know of so many EoE kids with tubes because they will not drink the formula.

The scopes aren't bad at all. No pain afterwards at all. It takes about 90 minutes for endoscopy and colonoscopy. The worst part is the clean out beforehand.
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  #6  
August 30th, 2011, 05:27 PM
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Danny has 12 food allergies which he has been diagnosed with progressively over the last 4 years. EoE is something that they will test for in a biopsy if he doesn't get better. FPIES is more of a stomach bug type reaction to food proteins in general and I am really not sure how they test for that. Danny is milk and soy protein intolerant but we did skin patch tests for those... I would request a ped-GI referral to try and figure out what is causing him to not tolerate foods. :/ It may be a long road or you may get quick answers. Does he have lower GI issues with foods or is it all kicked out the top quickly after eating? If he doesn't have lower GI issues they may not even want to do a colonoscopy. Danny has had many many endoscopies and they are easy. In out and on your way type of thing. The only thing that complicates Danny's is his RAD which makes him not breathe well and his allergies which make him have to use general anesthesia. I hope you can figure out answers for your little man soon but even if he has to be on the Neocate semi-permenantly or permanently it can provide all of his nutritional needs. ((((HUGS))))
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  #7  
August 31st, 2011, 06:45 AM
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We already see peds GI, but they didn't want to do anything invasive so young. So the game might change now that he's one. He has vomiting and diarrhea when he eats something hes sensitive to. But mainly is bloody diarrhea thats the problem. His refluxing has not been too bad lately. He only has 2 food allergies from RAST. I want to do patch testing though because he is also getting hives at times. I'm going to ask about it at his 1 yr allergist appt.
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  #8  
August 31st, 2011, 12:58 PM
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We go to CCHMC, which has the best EoE program in the US. They dx'ed Ava through endoscopy/colonoscopy. Ava had the same issues with diarrhea. They generally don't patch test until after 4 years old. I would be asking for scopes/ biopsies to see what shape his GI tract is in.
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  #9  
September 1st, 2011, 10:51 AM
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I agree. Allergy testing in any form is prone to false negatives until after age three and the odds are still not that great. I would push for the scopes, but that is me. Danny's first endoscopy was a few months before his first birthday and he has had many since then...the most recent was a few weeks ago... The colonoscopy may be able to wait based on results from the endoscopy but they may want to do it all at once. It is VERY difficult to do colonoscopies on yound children though. Danny was 3 I think when he had his done and the doc said he had a hard time navigating his large intestine... :/ It can be done...it just comes with more risks... We also had an overnight hospital stay before the colonoscopy to clean out his system... Endoscopyby itself is in, out, and on your way more or less...
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  #10  
September 1st, 2011, 09:56 PM
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That's where I'm worried. Ds doesn't have so many esophageal symptoms as lower GI I don't want a false negative due to a clear esophagus, but I don't want to traumatiz my son with a colonoscopy
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  #11  
September 2nd, 2011, 07:26 AM
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Quote:
Originally Posted by alicenwonderland View Post
That's where I'm worried. Ds doesn't have so many esophageal symptoms as lower GI I don't want a false negative due to a clear esophagus, but I don't want to traumatiz my son with a colonoscopy
We went through a LOT of tests when Carrie was little and I was SO afraid of how she'd react to them after they were done (in regard to being traumatized) but it was easier to comfort her when she was small. If you think he'll have to go through that test, I'd do it sooner than later. babies have short memories and although they fight, for us the fight just gets worse as they get older
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  #12  
September 3rd, 2011, 12:16 PM
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^^ Agreed. Danny was so much easier to calm when he was younger. Give him a toy, a bottle, juice, nurse him, etc and he was fine. Now it is coax him, snuggle, sing, dance, bounce, blankie, puppy, movie, and maybe he will calm down. He does better than most kids and with movie as the last resort he is usually fine. We recently switched docs and hospitals and the old hospital I was in the Endo room until he was gassed out and I was back with him as soon as the tube was out. I don't think most kids have to have general anesthesia though but I am not 100% on that... Anyway. If the GI is confident that he can do it at this young of an age I would rather have it done now. If they will do both at once that would be better because he wouldn't have to go twice...
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