Re: KLEINE-LEVIN SYNDROME

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Posted by PAM BLEDSOE on April 24, 2000 at 22:25:28:

In Reply to: KLEINE-LEVIN SYNDROME posted by ROBYN HOTTMAN on February 18, 1999 at 11:03:45:

Hi- We believe our daughter (18 yrs old) has this
and we have seen scores of Dr.s but we have located 2 doctors in Chicago who have seen at least 10 patients. I also have a detailed 2 1/2 page letter w/ symptoms, possible diagnosis, test, medicines, results, etc. Also, I have feedback from 6 KLS patients as of this date. Please let me know your email and I will forward this infor.
Thank you for your interest....this is a very disturbing syndrome. Our daughter as of 1/2000 has a 7day episode every 9 days or so. She is trying Depakote right now.
I'd be glad to talk and help as much as possible.
There is a biochemist from Boston who has 2 kids who have it, and he has located 2 labs who are willing to research if they can obtain spinal fluid from patients who have this. Ill give you the name and # later.
Thanks, Pam

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