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Re: Curious story on Dateline NBC--Klein-Levin Syndrom

Posted by Thomas W on October 26, 2000, at 16:45:11

In reply to Curious story on Dateline NBC--Klein-Levin Syndrom, posted by Noa on October 25, 2000, at 15:58:37

> Did anyone see this story on NBC last night? A teenage girl suddenly develops hypersomnia, lasting weeks, with brief semi-wakeful periods with altered mental status-seeming psychotic, talking strangely, etc.
> The family took her to a number of doctors who could not figure it out. Some accused her of malingering, and advised the parents to put a $50 bill on the table and she would wake up quickly. Of course it didn't work (they were desparate, so they tried it). They ruled out drugs, etc. and were stumped. Then it remitted suddenly, only to come back a couple of months later.
> Finally, after a couple of years, they found a psychiatrist (a woman) who spent a long time with them taking the history, etc. and she was the first one to say she knew it was SOMETHING although she didn't know what it was, but would do her best to find out.
> Well, the first place she looked was the DSM IV, and it was documented there. Ok, it is a rare disorder, but still, it was in the basic manual for psychiatrists, and none of the previous docs had found it.
> Out of curiosity, I decided to do a simple pubmed search today to see how hard it would be to find info on this illness just by entering two basic symptoms in the search criteria: hypersomnia and psychosis. Ther were hundreds and hudreds of Klein-Levin related articles. In five minutes, I found about 5 of them that had abstracts available and provided a description of the symptoms that were a good match for how this girl presented.
> I feel so much for this family. They said some of the doctors behaved arrogantly with them.
> If one doctor had just taken a little bit of time (in the end the doctor who diagnosed it spent 2.5 hours interviewing the girl and her parents and then only a few minute to find the answer!)this family, this poor young woman, wouldn't have had to go through the ordeal she did.
> Unfortunately, there is no treatment for KLS, but knowing about it helps in coping with it.


I did see that. I disturbed me a great deal as well
that it went undiagnosed for such a long time. I too
felf for that family. They have surely endured a
lot of pain, and going from one Dr. to the next, w/
no results. How could that many Dr's. not be able
to spot that. You know what, I think some Dr.s are
in such a big hurry these days, and are over
committed time wise and patient wise, that they
don't "dig" into things sometimes like they ought to.
It is scary. I've never hear of that disease before.
She seemed such an intelligent and sweet kid too.
I think that they mentioned that they "grow" out of
it sometimes, and my hope is that she will do just




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