There has been some discussions that foundation members have had regarding patients that have had spinal taps (lumbar punctures) during episodes.  There have been some cases in which people have reported experiencing some improvement in their symptoms shortly after having the spinal tap.  Has anyone experienced this improvement or lack of KLS symptoms shortly after having a spinal tap?

Our son Max has never had one ...but please let us know any new input and the results of what you find out.

Thank you so much

Gail in Floirda

Stephen,

I was wondering if there has ever been a discussion about have a national KLS workshop for parents and their children who have KLS. 

I would like to become involved and would as a teacher of 30 years and parent of a KLS student like to provide an advocate workshop for parents dealing with IEP’s and 504s.  It would be very theraputic to meet other families and network to become more proactive to get the word out.  “Knowledge is power” is what I constantly tell my high school students.

You mother was such a blessing to me when our son had his first event last year.  She is a forging pioneer…and was proactive because of her deep love and dedication to you.  It has kept me going and I am determined to further educate to anyone who will listen.

Gail In Florida

My daughter Nicole, had a couple spinal taps done in the very beginning of the onset of her episodes about 6yrs ago and we didn’t notice any difference in symptoms nor was anything found.

Vicki

Tyler just had a spinal tap done while he was in the hospital last month for complications from surgery.  He was not in an episode.  The only changes he had was pain in his back that prevented him from walking for a few days.  No fun for him.

Hey,

I only had 1 spinal tap done, my first episode. Because it was my first episode, the way i acted during it was a bit different than the following ones, because I didnt really understand what was going on. Anyways, when I had my spinal tap done… at first the doctor couldn’t find a space in my back…which was not fun at all. So, the doctor took me to another room, where they could use xray or something to see where the spaces in my spine were… When I was brought back up to my room, i was very talkative and giggly, but different than the usual way I had been acting. My mom asked the doctors and nurses if I had been given anything during the exam for pain, but they said I hadn’t. We’re not too sure why there was a change in my behaviour…but I was still in an episode… but just acted a bit differently… which…with KLS…isnt all that uncommon… so, i dont really know what to think of it.

My son had a spinal tap in the emergency room at Childrens Hospital of Philadelphia during his first episode as they tried to make some sort of diagnosis for what they couldn’t explain.  That was about three days into the episode.  They admitted him to the hospital and released him four days later after he came out of it without any diagnosis.

I was hospitalized for my odd behavior in 1970.  I had a spinal tap at the local hospital (which was normal) and again at a larger teaching hospital (which also resulted in a normal reading).  In both cases, the procedure did not affect my symptoms.