Psycho-Babble Medication Thread 47355

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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.

FIVE MINUTES.

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.

FIVE MINUTES.

 

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.
>
> FIVE MINUTES.
>
> 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.
>
> FIVE MINUTES.

Noa,

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
that.

 

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

Posted by noa on October 26, 2000, at 18:52:57

In reply to Re: Curious story on Dateline NBC--Klein-Levin Syndrom, posted by Thomas W on October 26, 2000, at 16:45:11

I hope so too. In the meantime, she has to be extremely motivated to hang in there in college. can you imagine?

The thing about the docs not "digging" a bit to find the answer--it literally took me, a lay person, 5 minutes at the library computer to come up with enough information for a reasonable hypotheses to pursue. I think you are right about the docs being way too hurried. Patients suffer.

 

This might interest you...

Posted by Sunnely on November 2, 2000, at 0:01:14

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

Hi Noa,

Didn't see the story. Found a report (Brussels, Belgium) describing how the use of melatonin (with lithium) alleviated the KLS symptoms in a 28-year-old man. It has been hypothesized that KLS is related to bipolar disorder.

KLS is complex and rare, primarily affects adolescent males, and is characterized by recurrent attacks of hypersomnia, excessive eating, and striking behavioral and psychiatric symptoms.

Reference:

Kornreich C, Fossion P, Hoffmann G, Baleriaux M, Pelc, I: Treatment of Kleine-Levin Syndrome: Melatonin on the starting block (letter to editor). Journal of Clinical Psychiatry 2000;61(3):215.

 

Thank you, noa (Re: Curious story on Dateline NBC)

Posted by S.D. on November 3, 2000, at 20:45:02

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

Thank you for this, noa.
It makes me want to cry, and to rage.
Not helpful moods for me now, so I will try not to dwell on it.

But I have saved it. For whom or when, I'm not sure. Somewhere, sometime I'll send it or read it to somebody. Maybe a patient, maybe a doctor. Maybe when that someone takes 5 minutes to read it, or listen to it, it will spark something. Maybe they will cry, or rage, or at least pause to think. If the karma is right, maybe it will be remembered and maybe it will change a life.

5 Minutes.

peace and health,

S.D.

 

Re: Thank you, noa (Re: Curious story on Dateline NBC)

Posted by Noa on November 4, 2000, at 10:13:31

In reply to Thank you, noa (Re: Curious story on Dateline NBC), posted by S.D. on November 3, 2000, at 20:45:02

SD, thank you for that feedback. I am glad you can put it aside if it is too upsetting for you in your present mood state. That is a sign you are at least doing something to take care of yourself.

 

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

Posted by imlucinda on March 18, 2001, at 16:19:16

In reply to Re: Curious story on Dateline NBC--Klein-Levin Syndrom, posted by Thomas W on October 26, 2000, at 16:45:11

I am the founder of the Kleine-Levin Syndrome Foundation, Inc. The website is www.klsfoundation.org. There are lots of females also with KLS. And it is true that most doctors do not know what it is. Their first diagnosis is usually depression, followed by bipolar, then they just don't know or say you are "too indulgent with your child and let them get away with this." Believe me, I have had my share of bad doctors for my son who has KLS. Anyway if anyone wants more info on this they can go to the website and read the diaries and the definition.


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