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sillymomx3

Need Help!

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I am in hopes that someone might be able to give me some info. on where to look for research on neurological and metabolic disorders due or linked to celiac. I and all 3 of my children are celiac. My youngest son, now 14 months was diagnosed with hypotonia (low muscle tone) at 2 months of age. Since we have found out he also has hypermobility syndrome, pectus excavatam, verbal delay and dx with celiac just before turning 1 yr. Hypotonia is usually always and in his case is a symptom of another condition. Because of this we are having trouble getting our insurance to pay for his braces and positioning equipment. He has been undergoing tests here and there and now we are hoping to see a geneticist but it is taking a REALLY long time. In the meantime I am trying to provide enough information to prove that celiac disease can cause hypotonia, this is different from muscle strength/weakness. I have found some supporting info. but would like to have as much to support my argument as possible, then we can list celiac disease as his primary dx (for now) and the insurance will pay for his needs until we can get him a medical card. I would really appreciate any help. I would also like to ask for prayers for him as it is thought he more than likely has a neuromuscular or connective tissue disorder. Thanks so much!

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Guest imsohungry

(((Hugs))) to you. I am sending prayers for an answer your way. This may be a dumb question, but does your son see a rheumatologist? I have multiple connective tissue disorders, and my rheumatologist is great about researching so that insurance will pay. I don't know...it was just a thought. My prayers are with you and your family :) Much love. -Julie

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Thanks for the reply. As of now he does not. He may be refered to one after we see a new ortho. He currently has a great pediatrician, an amazing ent, neurologist (so/so), a wonderful therapist staff for physical, occupational and speech. We were scheduled to see a geneticist this spring, but of coure insurance will NOT pay. So now we're in touch with Shriner's Hospital to see what they can do for him. He is having ear tubes put in on the 19th to alleviate the constant fluid and sporadic infections. We're unsure of how this will help his speech as he has choking problems which tell us that the delay is more than likely related to the hypotonia.

Can you tell me if there is anything in the line of vitamin/mineral supplements that seem to help with your connective tissue disorders?

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