Katie

Hey guys, I'm at a loss here, my daughter has been on Neocate since she was 4 weeks old and at 6 months began to have issues with it, or rice cereal or both. No one knows what actually set her off but it's been a bit of a downward spiral since January. She has extremely severe reflux which has actually caused her to start having seizures when she eats her bottles at times. She's on Prevacid, Zantac, and Maalox for breakthrough tummy pain now which help. Her GI Dr said that she had formed an intolerance to Neocate and put us on a formula called RCF which he said was our lsat option. Well, she did well for 36 hours, then the reflux, bad breath, diarrhea and stomach aches began coming back. He told us that we could retry her on Nutramigen as a long shot to see if that would work. He also said that if it didn't work then she would have to go onto IV nutrition. I'm an RN and am familiar with the risks of the central line catheters, infection, damage to the liver and many other effects of IV feedings. I just feel that this is unacceptable. There has to be something else out there for my little girl. Thankfully, her growth is fine.

Had anyone else been in this situation? Are there any formula's beyond Neocate? Has anyone ever made rice milk? Any other suggestions of things that have worked for your little ones?!? I'm desperately trying to avoid the IV feedings, but am just not coming up with any answers. Please help if you can! Thanks!

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Theresa

I am currently using Ele-Care which is pretty much the same as Neocate. my daughter has a condition called Allergic Enteroclolitis. She cannot digest soy, milk, grains or fruit. If she eats any of these things she gets stomacheaches, diareah, weight loss, and she also gets vitamin and iron deficient. Ask your doctor about the rice you are feeding her. Dr Vanderhoof, our Gastroenteroligist, told me that rice is one of the worst offenders for children with this condition. Janna, my daughter, has been tested for Celiac, Chrons and Cystic Fibrosis. Because she was negative, he doctor told us that he is positive that it is the Allergic Enterocolitis. She does well on her diet which is meats and vegetables, she loves beans! If you haven't seen a Gastroenteroligist, see if you can go to one. Look for one who specializes in Pediatrics.

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Alisha

Hi-My son was diagnosed with eosinophilic esophagitis a few years ago. The first formula we tried was Neocate Junior. His endoscopy showed he reacted to that. Then we tried Neocate one plus and that worked. The hospital (CHOP) told us that they have seen this happen before and they don't really know why but it does.
Lots of luck to you.

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Katie

Sounds like you guys have been through a lot of the same things we are going through now. How old was your son when they put him on the Neocate 1+? My daughter is 8 months old. She's on RCF now and is having upset stomach about 1x/day and diarrhea sometimes. Our gastroenterologist said that this is as good as were going to get as this is our last option. He said she would grow out of it but didn't know when. Have you guys ever heard anything about digestive enzymes? Several people have suggested that.

We tried the Elecare and she immediately threw it up all day so we switched back to Neocate. Then she got so bad with the Neocate we had to go to the RCF. HOw old are your kiddo's now and have they outgrown any of their food allergies?

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