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How is Kallman's Syndrome treated in an 8 year old boy? Also, which hospitals have done the most research on this syndrome?

Posted by shelley

My 8 year old son has been diagnosed with Kallman's Syndrome recently.  He has no olfactory bulbs, born with one kidney, undescended testes, mirror hand movements, and no sense of smell.  At what point does the hormone treatment usually start?  I imagine there's an optimal age to begin treatment, but I don't know what that would be.

I live in NJ, and I will be taking him to Children's Hospital of Philadelphia -- endocrinologist and geneticist.  However, I'm not confident that they are very familiar with this syndrome.  I'm trying to gather resources, in case it makes sense to get another opinion in another East Coast hospital -- perhaps a hospital that has done research on this condition.

I'd appreciate any advice you could offer.

Thanks very much.

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