KLINE-LEVINE SYNDROME....OH such a catchy little title for such a horrendous illness...PammieRose

My son developed Kleine-Levin Syndrome (KLS) around 15 years ago and still has it even at 30 years old.

This is an illness that creates what we refer to as "sleeping Episodes". He will go to sleep and literally sleep anywhere from 3 to 17 days, only waking to eat or go to the restroom. Once he does become fully awake again, he has no memory of anything that took place during the episode and feels just fine.

This illness is so rare that when he was finally diagnosed, there were only 22 known case in the USA. It primarily appears in young My son developed Kleine-Levin Syndrome (KLS) around 15 years ago and still has it even at 30 years old.

This is an illness that creates what we refer to as "sleeping Episodes". He will go to sleep and literally sleep anywhere from 3 to 17 days, only waking to eat or go to the restroom. I almost lost it during the 17-day episode, I didn't believe he would ever wake up again. Once he does become fully awake again, he has no memory of anything that took place during the episode and feels just fine.

This illness is so rare that when he was finally diagnosed, there were only 22 known case in the USA.

Along with the excessive sleeping, he also experiences vast cravings for sugar or sugar filled products, and he experiences varying psychological abnormalities. Of course these things take place only during a sleep episode.

Finding a diagnosis was a nightmare, because KLS is so rare. It took us eight months and during that time, I was told he was demon possessed and that he "probably" had multi personalities developing. Ludicrous and of course, none of that was the case.

He had to be placed in a mental hospital because we had no idea what we were dealing with, but it seemed psychological with all the sleeping. While there, his psychiatrist told me that he was just too normal when he was awake for this to be a mental illness and asked if she could take him to a neurologist that she knew in Orlando, Florida. Of course, I agreed.

My son's names is Shane and upon his visit to the neurologist, the doctor had received his first ever information on KLS four days prior to Shane's visit and was able to diagnose him immediately. What a relief..knowing is truly half the battler...I assure you.

The prognosis for this illness is that is is suppose to dissipate as mysteriously as it appeared by the time Shane turns 30. Well he is 30 now..this past October and he still has it I am sad to say.

Of interest, Shane and I have been in the newspapes twice and on tv once because of the rarity of his illness.

Fortunately Shane's job understands and allows him time off when a sleeping episode occurs. It primarily appears in adolescent boys around 14-15 years old, but there have been a few cases involving girls.

Why am I telling you all of this? Well with it being so rare, you just never know when someone else may be struggling with no clue.

OH one more point of interest. The doctors believe it is of a viral nature, but not contagious. They believe it is long acting virus that lays dormat in the nervous system and only rears it's ugly little head when the body's immune system is down. I tend to agree, because I know when Shane gets sick or very stressed, it will and does attack. And it's not heriditary either.

Hugs, PammieRose

I think this is pretty much self-explanatory.

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