Hirschsprung's? - Page 2 - Mothering Forums

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#31 of 36 Old 07-16-2010, 03:37 AM
 
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Originally Posted by seren View Post
I honestly don't know if it's Celiac, and I'm not so sure I care anymore.

It's crazy how much of a difference it can make, isn't it? I was SHOCKED when DD was... suddenly cured. It was like having a different baby.

With or without a diagnosis, I'm glad you've got something that's working, it makes all the difference in the world
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#32 of 36 Old 07-16-2010, 11:21 AM
 
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We're having some success, too, though with another tack. Still doing Miralax, though I've reduced it to only half an adult dose per day, and have FINALLY (thank you insurance!) started high-dose probiotics. She's having regular-ish bms -- at least pretty much every day. So, like you, I'm happy. Before, even with Miralax, it wasn't every day. We had to go of it while she was in the hospital (four days), and, sure enough, no poop. But, we're back on and going . . . . .

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#33 of 36 Old 07-17-2010, 01:49 AM
 
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Originally Posted by seren View Post
Blood test was negative. I feel so discouraged. I know there is something wrong, but I don't know what to do any more.
What was tested? IgG, IgE, IgA? My husband's niece tested positive for celiac only after doing all 3 of those markers, and a gut biopsy of some sort? and also comparison of the levels when on gluten, and when off of gluten.

We didn't get my son tested for celiac and I wish we had- I just couldn't keep him on gluten when I knew it was causing so many symptoms. We have seen so many improvements in his behavior and health. He also had constipation issues, especially around 2 years old. We also have bad memories of our kid "giving birth" to monster poops after going for a week and a half with nada!

Mama to my spirited J, and L, my homebirth: baby especially DTaP, MMR (family vax injuries)
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#34 of 36 Old 07-21-2010, 06:39 PM
 
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I am so sorry I did not see this earlier. My son has Hirschsprung's and has had many complications from it so I somewhat think I am an expert.

It is pretty rare to get a Hirschsprung's diagnosis outside of infancy. Kids who truly do have Hirschsprung's and are not diagnosed until later are very sick kids. In addition to constipation, they do not grow, they end up in the hospital a lot for dehydration and have many other signs of ill health including delays. The typical walking, talking constipated 4 year old with no other signs of health problems, does not have Hirschsprung's.

Constipation sucks. I hope this gluten free diet continues to work.
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#35 of 36 Old 07-21-2010, 07:01 PM - Thread Starter
 
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I had joined a yahoo group for parents of children with HD and it seems like a lot were more like my son than what you are describing. My son is doing well now, but when he was a much younger he wasn't even on the charts for growth. From 9-15 months he gained 4 oz. He had a severe speech disorder, even dh and I had a hard time understanding him. He was in kindergarten and wearing 3t clothes still. He actually didn't start really gaining weight until we started seeing the chiropractor.

I'm just thankful that isn't what he has. I'm not thrilled about a gluten free life, but it helps 3 of my four children with various issues and I think it's helping me as well.

Serenity LDS mommy to 4 rambunctious kidlets
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#36 of 36 Old 07-21-2010, 10:07 PM
 
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I'm really glad GF is working for you! That's great news. We have been GF for a little over 2 weeks, and it isn't working for us as far as I can tell. I'm going to give it a while longer. I'm glad you saw changes so quickly!
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