Hi there, My name is Monica and my son, Shawn is almost 19.  He currently has a severe seizure disorder with moderate brain damage.  He is also autistic and has CP.  He is mobile and communicative for the most part.  He was diagnosed with KLS in 2001.  However, he had been having the episodes since he was about 5.  Due to the fact that he had so many seizures daily, most of them during sleep, the KLS went undiagnosed.  These “episodes”, which we would describe as extreme sleepiness with a bumper car effect since he would walk around in a daze until he would bump into something and then he would walk in another direction, were diagnosed as Status Epilepticus (which is basically a constant seizure that continues for more than 30 minutes). 

Finally, we moved to the Gulf Coast due to a relocation with the military and found a doctor that immediately compared his baseline EEG with an EEG during an episode.  Since there was no change, he started talking to us about KLS.  We began researching and at the time, his episodes only involved sleepiness, constant hunger, and lethargy.  But the only information we could find on KLS was about people who had other neurological issues.  There is nothing about cases as complex as Shawn’s.

Over the past few years, his episodes have changed.  We are noticing definite behavioral patterns with major meltdowns and screaming before, during, and after and episode.  The problem is that his current doctor has “plateaued” on his treatment.  He is at a loss of what to do.  The symptoms of KLS, autism, and seizures are far too similar to figure out what is going on with him daily.  We have been to a few other doctors but basically, they are saying he is a rare case and there is no knowledge base to refer to where this is concerned.  The meltdowns are becoming unbearable to watch and to deal with. My family is frustrated and helpless.  No-one knows how to help him and I can’t find a doctor to take the time to study him to help him.  It is getting worse everyday.

I am hoping to find someone else who is dealing with the same thing or maybe a doctor that is willing to help.  I am quickly losing my baby and I don’t know how to help him.

Thanks so much.

My daughter does not have autism, but she had “associated characteristics.” She also had meltdowns. She was eventually diagnosed (MISdiagnosed?) with a form of schizophrenia with a mood component (and put on antipsychotic which only in retrospect we now realize was wrong (http://www.itsnotmental.com). Apparently there is some overlap in genetics and underlying biology. Amazingly, she no longer has symptoms of the schizophrenia/mood disorder. She is turning 22 and is happy, in college, and fairly healthy.

She had really bad allergies and we did notice that her meltdowns were a lot worse with the worse allergies. She is now on a diet free of gluten, dairy, soy and eggs, and she is on a lot of food supplements.  She is also on meds for allergies, supplements for allergies, supplements to help with sleep, prescriptions to help with daytime alertness and focus (provigil & wellbutrin - the short acting form used in the day, only).  It may sound like a lot, but she has a good quality of life now.