I am a mother of a 20 year old boy who we think has this syndrome.  Trying to find a neurologist who has knowledge about this disorder in the midwest is a challenge.  we are currently trying to get him seen at the Mayo Clinic in Rochester, MN.  More than anything we just want an answer as to what this is.  we have run the gambit of doctors with non-conclusive findings.  It is a stressor to my son because he knows when he is going into a “funk” and his biggest fear is that he will go into one and stay there.

Mother in Iowa

I understand the stress on you as the parent trying to find a diagnosis (KLS dx is based on symptoms without knowing another cause) and, more importantly,  treatment.

We even tried osteopathic manipulation. She quickly nixed it because EVERY single time she immediately ended up back in a sleep episode. After the diagnosis, the osteopathic doctor said, he now understood probably why.

It may get better as they get older.

I do know my daughter doesn’t have as many episodes now at 21 as she did at 16 & 17. Those were REALLY bad years!

-Naomi

My daughter has been diagnosed by a neurologist with no prior deallings with KLS.  She had many tests, which were all fine (which is usually the case with KLS), however her symptoms pointed directly to KLS.  I keep wondering if I should be doing more, or seeing more doctors.  But from all I have read, there is really no treatment that is effective and I hate putting my daughter through too many doctors visits and drug trials.

I don’t know if this would ever be an option for you but have you thought about going to the “best of the best” at Stanford?  Dr. Mignot is awesome and there are so many people that fly in to see him.  I definitely would but thankfully, for now, I am a mere 4 hour drive and don’t regret it at all.  It may be costly to do so, and I don’t know how your insurance would work it but instead of looking around for a doctor that may not know much more than the name of KLS, it may be worth it to go straight to the top.