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Kleine Levin syndrome

About Kids & Teens | Last Active: Jun 29, 2022 | Replies (18)

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@Jody3

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.

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Replies to "My son is 16 and was just diagnosed with Kleine Levin Syndrome within the past 2..."

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 />