My name is Jillian.  My son is Tyler.  He turned 7 in November.  When Tyler was two he started having seizures that they said he would grow out of.  Here we are 5 and a half years later with continued seizures and a diagnosis of Neurofibromatosis. 

In May of 2007 Tyler came down with chickenpox and when he gets sick, there is no waking him up from his sleep time.  Now, Tyler has always been an excellent sleeper beginning at infancy.  I am sure that it was mentioned at every single appointment from the day he was born.  When he was an infant, all the doctors said, “Be thankful you have a good sleeper!  Sme babies don’t sleep at all!” This I’ve learned with my second child....the non sleeper.  When he was a toddler and I brought up his sleep habits I was told, “It’s because of the medication.  That’s why he sleeps so much.” Fair enough, he has been on a lot of meds. 

Fast forward to May of 2007 when he got his chickenpox.  He slept...a lot.  He slept 20 hours a day throughout the summer.  I tried to keep him stimulated, even spending hundreds of dollars and sent him to camp....which he slept through more than once.  Once school got back in session I was worried about how he would manage to stay awake.  When he is tired, there is no stopping.  He’s stopped in the middle o the store and laid down on the floor and promptly fell asleep.  The majority of his days are spent sleeping.  He gets home at about 215 and is usually in bed around 330, only waking to go to school the next dat at 630AM. 

This has, like I said, stumped his doctors.  There was talk a few weeks ago about starting him on Provigil once we got his new medication cocktail worked out and even.  This past Friday he had bloodwork done in the morning and I dropped him off at school about 9AM.  By noon I had a call from his incompetent school telling me that he had been in the office three times with a tummy ache but he didn’t have a fever.  It was a little low, they said.  How low?  89.9 I picked him up and he began getting sick and we ended up taking him to the ER that night.  Even though we never got a reason for the bloody emesis, the temperatures...and lack thereof....our doctor for the evening started going over his history and came to the conclusion of KLS.  We sat together, in the room on the computer, searching this out.  It’s my son...exactly.  She was on the phone to Stanford that night.  So while I didn’t get the answers to what was going on that day, we got other unexpected answers. 

Not only was this diagnosis unexpected, little did I know that I would be “connected” to someone that lives near us that has been going through it with years.  Hopefully I can pick their brains a bit