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barsta

Kleine Levin syndrome

Posted by @barsta in About Kids & Teens, Dec 6, 2011

My son has been diagnosed and is undergoing additional testing prior to treatment. It started about 1-2 years ago right about puberty. He is currently 14 years old and continues to get worse.

Any thoughts on treatment of getting the trigger in the brain to help in getting him awake in the mornings?

We have tried multiple things, smelling salts, nicotine patches....

Tags: sleep problems

Jody3

Posted by @Jody3, Nov 30, 2015

My son is 16 and was just diagnosed with Kleine Levin Syndrome within the past 2 weeks. How has your son been doing in the past 4 years? How long have his episodes lasted? Does he still have them? My son has had 2 episodes. The first lasted 5 weeks, the 2nd lasted 10 days. He is still sleeping over 14 hours a day, but is much more functional than he was during his episodes in which he was sleeping over 22 hours a day.

barsta

Posted by @barsta, Nov 30, 2015

Thank you for writing.

Yes he had received multiple diagnoses depending on the doctors and symptoms at the time.

As with many of these diagnoses for anything neurological and sleep oriented you can get one of many different specific disorders.

Non-24
Circadian rhythm
Idiopathic hypersominia
Seasonal affective
Bi-polar

Our son has been on many different medications and his is a daily struggle.

We were hoping that this would have gotten better with time and hormones. He is now 18 and we as a family have embraced this and gotten a 504 plan through the school which has made everything much better. Other doctors aren't so sure that it is kleine levin. Many sleep disorders don't have exact features. Our son has symptoms of many of these but not all of any specific sleep disorder. He resets and goes through a major adjust period about 1 time per month.

Be patient and understanding of all of the sleep disorders.

Dr Rye at Emory university is also doing studies as well.

Until our son 100% embraces the medications and suggested diet and daily routine requirements it won't get a lot better.

He is on multiple medications for anxiety, depression, bi-polar, stimulants for waking him up nuvigil and trazadone to help him go to sleep. We are hoping to reduce the amount of meds once he embraces the lifestyle requirements.

I hope this helps. Don't give up. Read up on all of the sleep disorders.

Brett Arsta

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Jody3

Posted by @Jody3, Nov 30, 2015

Thank you for your response. I will definitely read up on the other sleep disorders you mentioned.

colleenyoung

Posted by @colleenyoung, Nov 30, 2015

@Jody3, Welcome to Connect. Has your son received multiple diagnoses too? What treatments have been suggested?

@barsta, Brett, Your response is so helpful. Teens and compliance rarely go together. Reading between the lines of your message, it sounds like you exercise great patience. It can't be easy to hope and wait for someone you love to adopt new lifestyle habits that will help him. Strength to you.

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Jody3

Posted by @Jody3, Dec 22, 2015

No, we have not had multiple diagnoses. So far we've been told there is no treatment. My son just had a sleep and nap test done to get further information. Awaiting results and possible options.

colleenyoung

Posted by @colleenyoung, Dec 30, 2015

When do you expect to get the results?

Jody3

Posted by @Jody3, Dec 30, 2015

Our appointment is tomorrow (12/31/15). We're supposed to learn the results of the sleep and nap test then.

colleenyoung

Posted by @colleenyoung, Dec 30, 2015

Best of luck with the appointment tomorrow. I hope you get some answers or at least a clearer indication of what's next. Please let us know how it goes.

Jody3

Posted by @Jody3, Jan 5, 2016

We had our appt. last Thursday (12/31). The sleeping test showed everything was "normal" so they are still diagnosing him as Kleine Levin Syndrome. For about a week he was up for 9-11 hours a day, but the pas week he's been up less than 5 hours for 2 days and the other days are all less than 9 waking hours.

The doctor has prescribed him with some medication to try and help force him awake, but we are waiting for the insurance company to approve it, so we have not been able to try it, yet.

The doctor (pulmonologist) said that if the medicine does not help, he will refer us to a pediatric neurologist.

colleenyoung

Posted by @colleenyoung, Jan 5, 2016

Thanks for the update Jody. I wish there was a quick and simple solution. But you are not alone. I thought you might appreciate this website about another family living with KLS http://www.kleinelevinsyndrome.co.uk/index.html

I'm keeping my fingers crossed that the approval from your insurance happens quickly and without complications.

barsta

Posted by @barsta, Jan 6, 2016

Hello all

Don't give up hope as we still continue to have some of the same issues. You will need to do a lot of research and practice a lot of patience and pray fervently.

It's not your fault and it's not his fault. It's embracing this and not letting it defeat you. Find joy when you can. As I said before I honestly believe all of these disorders are related and not any specific diagnosis is exact. It is getting more manageable with age.

Blessings to you and your family. Don't give up hope!

Brett Arsta

colleenyoung

Posted by @colleenyoung, May 3, 2016

Welcome to Connect, @davidwhitehurstbrown. Thank you for posting the references. Do you or a family member have Kleine-Levin syndrome?

davidwhitehurstbrown

Posted by @davidwhitehurstbrown, May 4, 2016

Thanks for your note of welcome. Kleine-Levin syndrome does not affect me or a close family member. In my 1993 publication "Abnormal fluctuations of acetylcholine and serotonin" (Medical Hypotheses vol. 40, pp. 309–310, I speculated that prolonged low levels of acetylcholine within the mammalian brain might be correlated with KLS symptoms. My speculations might be relevant to the Crick-Mitchison theory of REM sleep.

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davidwhitehurstbrown

Posted by @davidwhitehurstbrown, Jul 28, 2016

Abnormal regulation of leptin, orexin, and/or ghrelin might cause, or be correlated with, some of the symptoms of Kleine-Levin syndrome (KLS). Injections of the orexin-1 receptor antagonist SB-334867 might be a plausible therapy for KLS.

https://en.wikipedia.org/wiki/SB-334867

https://en.wikipedia.org/wiki/Orexin

http://press.endocrine.org/doi/abs/10.1210/jc.2004-1003 Spiegel, K., Leproult, R., L’Hermite-Balériaux, M., Copinschi, G., Penev, P. D., & Van Cauter, E. (2004). Leptin levels are dependent on sleep duration: relationships with sympathovagal balance, carbohydrate regulation, cortisol, and thyrotropin. The Journal of clinical endocrinology & metabolism, 89(11), 5762-5771.

davidwhitehurstbrown

Posted by @davidwhitehurstbrown, Aug 4, 2016

Acetylcholinesterase inhibitors (such as tacrine) might be a plausible experimental therapy for some cases of KLS.
NMDA receptor antagonists (such as memantine) might be a plausible experimental therapy for some cases of KLS.

https://en.wikipedia.org/wiki/Alzheimer%27s_disease#Medications

http://neuro.psychiatryonline.org/doi/full/10.1176/appi.neuropsych.13050110 U. K. Rout, M. S. Michener, & D. M. Dhossche. "GAD65 Autoantibodies in Kleine-Levin Syndrome." The Journal of neuropsychiatry and clinical neurosciences 26, no. 2 (2014): E49-E51.
http://www.neurology.org/content/59/11/1739.short Y. G. Dauvilliers, Y., G. Mayer, et al. "Kleine-Levin syndrome An autoimmune hypothesis based on clinical and genetic analyses." Neurology 59, no. 11 (2002): 1739-1745.
“Testosterone is a vasoactive hormone that predominantly has vasodilatory actions on several vascular beds, although some studies have reported conflicting effects.”
http://joe.endocrinology-journals.org/content/217/3/R47.short D. M. Kelly & T. H. Jones. "Testosterone: a vascular hormone in health and disease." Journal of Endocrinology 217, no. 3 (2013): R47-R71.
If some cases of KLS result from an autoimmune disease, then the damage induced by autoantibodies crossing the blood-brain barrier might increase in adolescence because of the vasodilation caused by testosterone.

davidwhitehurstbrown

Posted by @davidwhitehurstbrown, Aug 6, 2016

According to a 2015 KLS review by Arnulf (presenting evidence published by Laval, Ann Neurology, 2015):
“Lithium therapy
• Complete responders: 36.6% 
 • Partial responders: 51% 
 • Non responders: 12.4% 
 • 9.8% had « mini-episodes » (1 day) on lithium 
 • 13 patients had an episode after stopping lithium 2 consecutive nights 
 • Level IV evidence of benefit in KLS 
 • Lithium : 1 month less in episode per year 
 • The level should be high and monitored”

http://klsfoundation.org/wp-content/uploads/2015/12/Kleine-Levin-Syndrome-Update-2015-Professor-Isabelle-Arnulf-PhD-MD.pdf

According to a 2014 KLS review by Miglis and Guilleminault:
“… Although an autoimmune mechanism has been suggested, there are likely heterogeneous factors at play in certain susceptible individuals. When combined with a precipitating event such as a minor infection, a transient multifocal encephalopathy ensues. It has been proposed that such a precipitating event may lead to transient permeability of the blood–brain barrier, thus predisposing these individuals to recurrent events. An animal model would add much to the understanding of the underlying pathophysiology. This is yet to be developed and should be considered in future research. …”

http://klsfoundation.org/wp-content/uploads/2013/02/2014-KLS-Article.pdf

In Table 4 on page 2771 there is a list of attempted treatments for KLS:
http://brain.oxfordjournals.org/content/128/12/2763.full I. Arnulf, J. M. Zeitzer, et al. "Kleine–Levin syndrome: a systematic review of 186 cases in the literature." Brain 128, no. 12 (2005): 2763-2776.

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