Hi
My 12 year old son was just diagnosed with KLS.  He has had I’m guessing about 4 cycles in the past 12 weeks.  They seem to be 5-6 days of hibernation followed by 4-5 days of him being his wonderful self.  No mediciations are working yet (I’ve given this kid so much Adderoll per my doctor that I’m stunned that he sleeps--he should be clinging to the ceilings or keeled over from a heart attack).  Josh hasn’t been in school in 15 weeks (2-3 of that was getting over a stage 3 concussion) and he can’t play ice hockey (his one true passion) .  This has been a nightmare.  What are we in store for next?  We live outside of Philadelphia.....are there any others like us in this area? 

We’re ont he complete opposite coast but wanted to say hi anyway!  My son is 7 and has KLS.  We did the Adderall and it made him sleep more.  We’re trying the Provigil and it doesn’t work either.  I’ve been told more than once that no drug is really going to help with the KLS but until we get in to see Dr. Mignot, I’m trying to be good and follow the neurologists requests.  We’ve been working together for almost 6 years and I don’t want to be a pain in the rear and just say, “They say it won’t work so I’m not going to even try it!” There are days when I want to give him Dr. Pepper with a few spoons of sugar but that won’t help either.

Hang in there.  The process seems to move slowly but surely.  Hope Josh continues to recover from the concussion.

I’ve considered Red Bull!  Our doctor started talking about extended release Adderoll or a patch delivery system of another stimulant?  Anyone out there experienced success this way?

From what I’ve been told and what I’ve red, nothing helps.  Nothing will prevent an episode and nothing will take him out of it.  Tyler is on so many meds as it is so I hate even adding one or two.  I’ll fiddle with adding something new three times but that is the absolute max.  Provigil seems to be strike two so by my own rules I should give one more thing a try but I’m not seeing much hope.  Unfortunately...or fortunately, we don’t see the neuro again until July so I won’t have to fight with him over the medication thing.

No ideas on the patch.  I’d love to have one that worked.

Hi there!

I hope all is going well for you at the moment! I’m a 20yr old young lady from Australia, I was diagnosed with KLS some months ago, and am still going through the long process for amphetamines, which I must admit, all my hopes hang. It piqued my interest that your son had a concussion. I was just wondering if it was the start of his kls? I had a horse riding accident 4 years ago, and my doctors say that my concussion then caused my kls (it seems I’ve had it for 4 years and have just battled on… such a relief to know there’s a chance of actually being awake again! But I don’t need to tell you that.) I wonder in how many cases a head injury is linked with kls? Anyway, hang in there, I hope things pick up.

Jemima