Help for my son

• By dibar
• Posted April 8, 2008 at 1:50 pm
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Polyneuropathy can cause pain like your child describes in his feet and legs. Sometimes it is caused by vasculitis. The blood vessels get inflammed and then not enough oxygen gets to the feet or hands causing neuropathy. The vasculitis has to be treated, try taking the child to a neurologist knowledgeable about vasculitic damage to nerves.

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• By psjaquith
• Posted April 9, 2008 at 4:16 pm
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Have you seen any specialty doctors? Are his rashes worse or show up only after sun exposure? There are several medical conditions that can cause these problems....but, I personally would start with a genetic/metabolic specialist. Those symptoms could be caused by a wide array of these..the only way to find out is going to be through someone who specializes and through specialized testing.
If your pediatrician doesn't want to do a referal to have him checked, then I'd find another pediatrician. I say this because I have a daughter with an extremely rare disease and know a lot of other families with different disorders.,.if there is a metabolic issue, then the faster diagnosed and treated the better.

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• By uptildawn04
• Posted April 9, 2008 at 11:18 pm
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Yes he has a neurologist but he has only done blood work and an EMG in the last 6mons.He is not on meds.And all he said is its metabolic and the doctor does not know what kind or how to help it. Thank you

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• By Noreen6
• Posted July 9, 2008 at 2:01 pm
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Well first, your son is a cutie!! I have no idea if I am on the right track, but this would be food for thought. My son has dermatomyositis, ( a rare immune disorder where your body attacks your muscles)and there is a junior version that starts when they are young. F emales are more likely to get it, and it does cause muscle weakness...the weakness usually starts in the trunk...he was 8 when he got it, and had difficulty even climbing the stairs. He did have a faint rash, but fortunately is not prone to that part of the illness.We live in Canada and were referred to a rheumatologist. I will leave you with this, and you can investigate further, and see if it might be of any help. I do wish you good luck in finding a diagnosis, and I'll keep you in my prayers.
N

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• By psjaquith
• Posted August 12, 2008 at 1:09 pm
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Since the neurologist said that it is a metabolic issue, has he seen a Genetics/Metabolic specialist yet? They are the ones who can fine-tune testing needed to identify the metabolic error and treat it. There are a myriad of them out there and when I read your post that was my first thought.
Whether it is an organic acidemia or fatty oxidation disorder....there is a fine website offering a lot of family support at www.oaanews.org. I hope that you get an answer soon. I know how frustrated you have to be right now.
Keep us up posted on how he's doing and you too.
penny jaquith

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• By shan789
• Posted August 13, 2008 at 11:42 am
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My, nephew has some of the same issues, and he dx with DiGeorge syndrome. It has a broad spectrum of things that can be wrong with a child. He saw a genetics, to be dx. He has auto immune problems, along with spinal issues. Just a thought.
Shannon

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• By cronicX4
• Posted August 14, 2008 at 9:18 am
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Another suggestion is to find a new neurologist! If he is having that much problems and that's all the test being done, get a new one. It took me several before I found one that tested the right things and not just retest the same. He is a really cutie and my prayers go up for your strength and his healing.

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