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Old 03-31-2013, 08:12 AM   #11
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Re: Vitamin D deficiency...

I don't have any ideas except a suggestion that you get him on an oil based D supplement rather than powdered. Powdered supplements for D don't work that well especially with someone who is seriously low. Both my father and my aunt were seriously low (aunt had cancer. Dad we never really knew why). Their D levels turned around and both are within normal now. They take Premier research labs vitamin D. A couple drops sprinkled on your hand and then licked is all it takes. It tastes just like olive oil.

I am sorry your little boy is so sick.

Eta: both my aunt and dad previously took dry vitamin D in capsule form and had no change.

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Old 03-31-2013, 08:16 AM   #12
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Vit D in a multi is often insufficient. Check w your Dr but try higher levels, at least 2000 iU

Get him out in the sunshine without sunscreen. Best way to absorb Vit D.
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Old 03-31-2013, 08:56 AM   #13
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Re: Vitamin D deficiency...

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Originally Posted by 7 for now View Post
He had rectal biopsies done in Nov and he did have ganglion cells seem in 3 out of the 4 biopsies. His issues really started when we introduced solids at about 8 months old. Hey have spiraled from there. He ha had the Rast blood tests for some food allergens, mainly milk, casein, whey, lactose and they came back fine. His sphincter is fine. The stool was in a place they rarely see constipation in. It was in the transverse colon which has made his colon enlarged and his belly distended. He sees a ped GI at one of the top 10 nationally ranked Children's Hospital. We are going to redo all testing this summer and se where we are compared to last August. It is just frustrating.

I am not sure how they will treat his vitamin D deficiency though for now?

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Very common for HD kids. It's a random disease, sometimes genetic...sometimes there's no family history at all. That was the case for us. I have another mom friend with an HD son that already had surgery. She suspected that they didn't get it all and had him biopsied again. It was normal. 2 years later he was still struggling and they put him under anesthesia to do another biopsy which showed that he still has a diseased portion. I think you'd be smart to repeat those tests.
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Old 03-31-2013, 09:18 AM   #14
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Re: Vitamin D deficiency...

OP, I hope you find answers for your boy. I would try elimination for celiac as well. And explore HD testing as well. My 10yo DS has Hirschsprungs disease. There is also a FB group for HD, if anyone would like the link just send me a PM.
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Old 03-31-2013, 09:22 AM   #15
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OP, I hope you find answers for your boy. I would try elimination for celiac as well. And explore HD testing as well. My 10yo DS has Hirschsprungs disease. There is also a FB group for HD, if anyone would like the link just send me a PM.
We did the rectal/colon biopsies via colonoscopy in November. They showed he did have ganglion cells in 3 out of the 4 biopsies. So they ruled out HD. They said in HD there would be no ganglion cells seen and he did have them. But we are going to repeat everything in July/August to see if there is any more pieces to his puzzle.

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Old 03-31-2013, 09:32 AM   #16
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Re: Vitamin D deficiency...

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Originally Posted by 7 for now View Post
We did the rectal/colon biopsies via colonoscopy in November. They showed he did have ganglion cells in 3 out of the 4 biopsies. So they ruled out HD. They said in HD there would be no ganglion cells seen and he did have them. But we are going to repeat everything in July/August to see if there is any more pieces to his puzzle.

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So in that 4th did they not find any cells? It could be that that 4th area is where the disease is if he has it, kwim? My son's segment was very small at the very end of his colon but he couldn't stool at all. I would ask at the repeat testing to be sure. It really sounds like you've covered so many bases.

You could also try to get a phone consult with the Colorectal Center at Cincinnati's Children's Hospital. It could be helpful to have another set of eyes no matter how good the current ones are. I've heard so many life changing stories come out of Cincy. We were going to go there but our surgeon at Georgetown was doing similar things that worked for us.

Good luck, mama.
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Old 03-31-2013, 09:42 AM   #17
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Re: Vitamin D deficiency...

One other thing, Miralex is a stool softener with a very, very mild laxative in it. So he may need something that will create constriction like a stimulant laxative does to work his stool down.
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