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- Can Children with low Coagulation Factors supp w/ Vitamin E -?

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> Vit E deficiency causes a peripheral neuropathy...and lack of pain

sensation.

,

I am sure that Ethan has experienced peripheral neuropathy in the

past. I also think that vitamin E helped to resolve that. (Although

we have been down to 85 IU per day for weeks now and I am not seeing

any obvious symptoms that he has begun to experience it again.)

The problem is that even on only about 285 IU alpha and 200 mg gamma,

and with extra vitamin K, his coagulation factors all came back

borderline low. You said that there is " something else " going on.

You may well be correct - the Director of Clinical Genetics at CHOP

thinks he may have a mild syndrome (testing so far negative for

chromosomal anamoly but she has her researchers searching for it). So

the question is, even if it is not the E causing the low factors -

say he has Von Willebrand or something instead - is it safe to give a

supplement like E? Or for that matter even high doses of PUFA's?

What do you do if a child needs it but it is not safe? Is there an

alternative?

I am quite frankly very worried. I don't want to cause permanent

nerve damage by witholding it but Ethan may have hematological issues

and I aldso don't want to cause a stroke ... Obviously I am

discussing this with our own doctors but I would like your opinion as

well.

Thanks in advance for your response.

Nadine

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