Kleine Levin syndrome

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.

Thank you for writing. <br />
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Yes he had received multiple diagnoses depending on the doctors and symptoms at the time. <br />
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As with many of these diagnoses for anything neurological and sleep oriented you can get one of many different specific disorders. <br />
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Non-24<br />
Circadian rhythm <br />
Idiopathic hypersominia <br />
Seasonal affective<br />
Bi-polar<br />
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Our son has been on many different medications and his is a daily struggle.<br />
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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. <br />
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Be patient and understanding of all of the sleep disorders. <br />
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Dr Rye at Emory university is also doing studies as well. <br />
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Until our son 100% embraces the medications and suggested diet and daily routine requirements it won't get a lot better. <br />
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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. <br />
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I hope this helps. Don't give up. Read up on all of the sleep disorders. <br />
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<br />
Brett Arsta<br />

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

@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.

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.

When do you expect to get the results?

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

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.

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.

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.