Hello everyone, my name is Ieesha Anderson and my son was diagnosed with KLS in March.  He is 10 yrs old. I am a single mom and pretty much has to deal with this all alone.  I really need the support from other mothers on how to cope and deal with this.

Dear Ieesha,

My name is Gaylene and my son is 16 now but was diagnosed at age 14.  So, we have a couple of years of experience with KLS- I know there are others who have many more years under their belts.  how can I help you?  I have done the single Mom thing and know how challenging that can be.  This forum and the entire KLS community is very helpful and can give you lots of insight about how others cope with KLS. 

I would like to know how your son was diagnosed and how he is doing now.  Do you have a doctor who is following him?

My best to you and your family.
Gaylene

Hello everyone, I was wondering if anyone recieves disibility for their child?

I’m amazed at reading the posts how easy it seems to be to get your child diagnosed. My son is 18, had his first episode when he was 15. Although I did take him to the emergency room for his first episode, they had no idea. Recently, I (single mom) was able to obtain insurance and a diagnoses still hasn’t happened. He has seen a neurologist, who didn’t know hardly anything about KLS, he has had an MRI… I mean what am I supposed to do or say to the Doctor to get a formal diagnoses? I brought him literature, I have logged every episode on a calendar. He’s now in an episode, so I am trying to get an appt. with the Doctor, but he’s usually scheduled out a couple weeks. It’s just frustrating. What is the factor that convinces the Doctor?

ieeshaa01,

My best advice is to be there for your son. Talk and listen and be grateful you have a diagnosis - that way his school and future employer will know to handle him with fairness. I don’t think you can get disability for this, which is a shame considering the debilitating tole it takes on the lives of people who live with KLS. And, make sure he wakes up to drink! Got to keep him hydrated. Good luck and feel free to reply.

ieeshaa01 - 09 September 2009 06:33 AM

Hello everyone, I was wondering if anyone recieves disibility for their child?

What do you mean by disability?...You can get your child classified under 504 (Americans with Disabilities Act ) for protection and help in schools if you have a diagnosis….You have to talk to the school councilor to get the process going.  Also I am checking into what is called an “wrap around”  service for my son. I applying for Medical Assistance and they don’t county your income if your child is diagnosed with certain mental disorders. The Medical Assiatance pays for the “wrap around” service….it is a serivce where they can come to your house and help with other things…I don’t know the specifics of it yet but my sons PDoc said I should get it.