My name is Sheila and my son Kevin was just given a probable diagnosis of KLS.  He is 14.  He also had an irregular EKG while in the hospital with a prolonged QT interval.  I was wondering if anyone else has had a similar cardio issue?

I am also looking for advice for reasonable accomodations for a 504 plan.  He will be a freshman in the fall at a pretty rigorous high school.

I am very thankful to have this forum for support.

Dear Sheila,

Hi, my name is Gaylene and my son is 16 and has had KLS for over 2 years now.  He started at 14, too.  You mentioned hospitalization…was this his first episode and what led up to the admission.  Who diagnosed him?  We did not see a cardio issue when in the hospital ( first episode) but I also do not remember that they ever did a 12 lead EKG.  I think that is the ONLY test they did not do!!!

We have been working for 2 years to refine our son’s IEP accommodations and I would be happy to share them with you.  Can you give me a fax number so that I can send that to you?  I can also scan the documents and emai them to you.  Whatever is best for you. 

This forum and the KLS community is an extremly helpful support system.  We do not know what we would have done without the information and guidance for treatment and care. 

I would be happy to speak with you or help in any way that I can.

Gaylene

Thank you Gaylene for your note.  This was my son’s first episode…and I am praying the only.  However, he is so typical of the cases I have read that I am not overly optimistic.

He developed flu like symptoms and we thought he had swine flu.  He had a headache, fever, and sore throat.  He was just “typically” sick until the fifth day when he began to sleep all day.  By the sixth day his behavior was altered.  By the 7th day we knew he was so cognitively off (he thought the year was 2007, he was rapping constantly and reciting rhymes) that we took him to Children’s Memorial Hospital in Chicago.  We thought he either was having a psychotic episode or had meningitis.  There he has numerous tests done.  A very bright neurologist brought up this syndrome within 12 hours of our stay.  They have seen two other cases of KLS over the last ten years.

My son will not have an IEP but he is eligible for a 504 plan.  But, I know accomodations can be very similar on both, so I would love to see what you have put in place for your son.  Our fax doesn’t receive well, so if you could scan the documents and send them, I would appreciate it.  My email is .(JavaScript must be enabled to view this email address).  I really appreciate it.

Since coming out of the episode which lasted about 16 days, Kevin has terrible insomnia.  Has anyone else found that to be true?  He tried meltonin but it didn’t seem to help.

We are going to see Dr. Mignot at Stanford in July…just to see if he can answer more of our questions.

Thanks again Gaylene.  Sheila

Hello Sheila, I am from Chicago as well and has a 10 year son who was diagnosed with KLS this year and was admitted into Children’s Memorial hospital for a week.  He also started by having these same symptoms like rapping and singing too.  They have put him on Divalprovex because his episodes were coming every other week but this medicine seems to be working.  Which neurologist are you seeing there.  The doctor I deal with is Dr. Kondie and he is very attentive when it comes to dealing with your child. If you want more info just contact me whenever you have a chance.

We actually heard about you at Children’s Memorial (was it about 6 months ago you were there with your son?)

So far we are following up with a Dr. Millichap, neurologist (who I am not impressed with).  Maybe I will call your doctor instead?  Is he also at Children’s?  We also have to schedule appointments with a Dr. Plioplys a neuropsychologist who specializes in kids who manifest as pschiatric when it is actually neurological.

We also have to follow up on some cardio things since my son’s heartrate was so slow while in the hospital and there were irregularities on the EKG.  Our theory is that in an episode he will have these sypmtoms but then they resolve.

We live in the northern suburbs.  Call me anytime.  Maybe between us we can find the best doctors in the Chicago area.  My cell phone number is 847-791-1058.

Hey Sheila,
It was the beginning of this year when we were there.  Yes, Dr. Kondie is at Children’s Memorial as well.  We have an appointment with him on Wednesday.  He is wonderful!!  I calls him, my grandmother and aunt calls him when it get hard for us to deal with him when he is having an episode.  He picks right up and explains to us that the symptoms are normal for KLS. He called in a prescription right away for him to try and it seems to be working so far.  So on all those notes, he seems great.  His name is Dr. Kondie and his # is 773-880-4352.  My number is 708-819-1543

Thanks I made an appointment with him (Dr. Kondie)in August!

Great!!  Mine is today and I will let you know how it goes.