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Member Since 27 Jan 2009
Offline Last Active Jun 25 2009 04:38 AM

Topics I've Started

Neuro Symptoms

11 June 2009 - 07:24 AM

Hi my name is Valerie, my 6 y/o DD Avery has been having some more strange symptoms and I'm wondering if anyone else has seen or dealt with something similar.

First things first we have been to the Dr and return again on Friday afternoon.

Avery was diagnosed Celiac, by endoscopy in December. Once we started her gluten free she started to thrive and do amazingly well. In 4 months she gained 10 lbs and grew between 4-5 inches. HUGE growth spurt. She started to chub up and look just incredible. Then about 6 weeks ago, she came down after waking saying she felt shaky inside. Her whole body was visibly quivering, I gave her some juice and made her a hearty breakfast which seemed to help. The next day she woke sick with a virus, so the next few days of shaky complaint I attributed to being sick. I gave her 2 weeks and made extra effort to be sure she had a good source of protein with each meal, just in case. Then it seemed to disappear for about a week and returned. We've been to the Ped. She did a glucose tolerance test which came back normal. The Ped said it could be related to going gluten-free, but the dietitian says no way, I lean more with the dietitian. Anyways, now in the last 2 weeks since the blood tests it's gotten a bit worse, her face kind of twitches on one side of her mouth. Every morning when she wakes up her body is shaking so bad she has a hard time walking down the stairs. It doesn't seem to be related to blood sugar because it just goes as quickly as it comes. Like I said we have an appt on Friday with her GI who is far more willing to be investigative than her ped, which is why I'm waiting. Most of her Celiac symptoms were neurological, and now I'm worried that maybe there was some damage done.

Anyways, I don't know if anyone has had anything similar but with the ped and dietitian at a loss, I'm grasping in hopes of finding something. I feel so bad, nothing ever seems to go right for her and I just want her to feel good. Oh and in December her thyroid function was properly tested and came back normal, all of her vitamins were within normal, with the exception of her Calcium which was slightly low but he expected it to improve with diet.

Mum to Avery, age 6 - diagnosed December/08
-ataxia & peripheral neuropathy were her main symptoms-

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