Hi Everyone,

I don’t even know where to start, but to put it briefly….my son had his first episode in 9th grade; he’s now a junior (supposed to be a senior) however he was held back last year because he had 4 episodes that resulted in getting behind in the school work. Anyway, I only figured out that he had KLS by watching an episode of Mysterious Diagnosis in Nov. 08. I work full-time (single mom) but I can’t afford health insurance through my employer. I don’t know what to do to get him formerly diagnosed?? Is anyone, who has KLS, on Medicare? Do you think a Doctor would test him as a charity case? Also, do any of you have kids that are on a 504 plan with their education? It’s like a vicious circle we are in. He needs to be on a 504 plan so he can get through school, but the school needs a formal diagnosis, so I need a Doctor to see him, but I have no health insurance - even if I had insurance, I have a strong feeling I couldn’t afford what would be my portion to pay for all these tests that are required to get the diagnosis..I need help and direction and would be very, very appreciative if anyone could help guide me. Thank You!!!!!!

I don’t know about the financial end, but for us it only took one appointment with the Children’s Hospital Sleep Center to get a diagnosis.  We described (and brought in a diary) or exactly what happened in each episode and it was obvious to them that it was KLS.  We did show them some blood work that had been taken in previous episodes. 

I don’t know if this helps you.  But, it seems that if you go to someone who knows about KLS, it’s not hard for them to recognize and diagnose based on the description.

Good Luck!