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Old 04-14-2009, 11:19 AM   #1
pigget74
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Have you heard these gastro conditions?

We are searching for answers for my 18mth old. Her pediatric gastro. thinks it could be one of the following, but we are not sure. We are in the process of testing--go back on the 30th for a breath test and will also discuss biopsies of her pancreas, small and large intestines--this is depending on what the breath test and poop cultures say.

1)carbohydrate malabsorption
2) Congenital Sucrase-Isomaltase Deficiency (CSID)--FROM WHAT I UNDERSTAND THIS IS GENETIC AND IS CONFIRMED ONLY BY BIOPSIES.

I have read some about both of these, but would like to here from others that actually know about them.

Thanks
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Old 04-17-2009, 07:17 AM   #2
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I am sorry, I am not familiar with these, I am sure you have googled and read on what is on the Internet.. Hopefully someone else has had experience with this and will post.
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Old 04-17-2009, 10:53 AM   #3
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Thanks. I have done my own research, but you know how that goes... I was just trying to see if anyone had any first hand experience with either of these. Of the two the first would be the one we would want if there is something wrong.
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Old 04-21-2009, 10:44 PM   #4
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Have you tried Neocate?

My DD did not tolerate soy or dairy and her bottom looked EXACTLY like you described until she was on Neocate for 3 weeks. It is an amino-acid based formula for children who have food intolerances. They are not allergies and would not show up in allergy testing. (They are non IgE mediated.)

It's expensive, but has been totally worth it. My DD (now 16 months) is thriving--though we still use Neocate Junior for overall nutrition.

What other symptoms is she having?
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Old 04-22-2009, 12:41 PM   #5
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Quote:
Originally Posted by jse107 View Post
Have you tried Neocate?

My DD did not tolerate soy or dairy and her bottom looked EXACTLY like you described until she was on Neocate for 3 weeks. It is an amino-acid based formula for children who have food intolerances. They are not allergies and would not show up in allergy testing. (They are non IgE mediated.)

It's expensive, but has been totally worth it. My DD (now 16 months) is thriving--though we still use Neocate Junior for overall nutrition.

What other symptoms is she having?
You asked what her other symptoms were---she has had a lot.
Screaming Spells—not colic—screaming in agony for 45 minutes or more and then it stops as suddenly as it started—no rhyme or reason to them.
Distended Stomach—she usually has an inny belly button, but it has become an outy most of the time.
Severe watery diarrhea—10 to more times a day for a long time—here lately up to 5.
Dropped from 25% to 5th %

I started asking about her pooping when she was just a few months old. I nursed her until 9mths, but she never stopped having the newborn diapers (amount). They never changed consistency, color, or amount. Because she was gaining—even how tiny it was our doctor did not want to send her elsewhere. When we started formula we thought things would change, but they didn’t. Still the same amount, but now just more watery. At her year checkup I asked again, but she had grown a tiny bit so the answer was lets wait and see—she is getting nutrition. In October when she was 13mths we had an ecoli problem in the water—we gave her bottled, but during bath time she would get some in her mouth. The problem got worse and she stopped eating or eating very little. They tested her for everything and said to get off milk until she was better. All tests came back negative. We put her on rice milk and the diarrhea did not get better, but we realized her butt improved greatly. Her bottom had looked like someone took a meat clever to. It was her cheeks up to her diaper line. It was always bleeding and itchy. This now was gone. She did still get some major diaper rashes and if you changed brands of wipes her skin would bleed. Well in Feb. the diarrhea got worse again and our Dr. finally said it was time to go elsewhere. Our Ped. Gastro. said that she is very sick, but just does not know what it is. We do know it is not Toddler Diarrhea or IBS. They are doing a poop culture for fat, protein, and PH levels. At times her butt looks like someone has just poured acid all over it. It can happen in matter of seconds. She will look great on the bottom and then have one bad diaper—she lets you know quickly or you can smell the horrible smell—by the time you change it she is already raw and bleeding. You can only imagine what it is like when she has 10 a day. This is different than the other bottom issue that I mentioned above. In March this one came back and as of yesterday it is finally starting to clear up.

Hopefully by the end of next week we will have some answers.
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Old 04-30-2009, 11:31 AM   #6
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I hope you get some postive results soon. The diaper rash issue sounds exactly like what my DD had. It was horrible--blistering, red, painful, etc. Our DD isn't allergic to milk or soy, but does have multiple food protein intolerances. The Neocate is a large part of her nutrition right now.

Has your ped. GI suggested trying this for a month or two? (Sorry if I sound like I'm trying to simplify things, please know I'm not. I know how frustrating it can be to try to figure this stuff out.)
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