Posted by PBledose on July 11, 2000 at 23:46:40:In Reply to: Re: KLEINE-LEVIN SYNDROME posted by PAM BLEDSOE on April 24, 2000 at 22:25:28:
7/11/2000-Update on our daughter, Lindsay, who we believe to have KLS. She has been on 500mg. of Depakote 2 x a day for approx. 10 weeks now with total success! The medicine is supposed to be regulating her sleep/wake cycles, and its working!!! Once we got her on the correct dosage she hasn't gone into a spell since....big change from a cycle of 9 perfectly normal days then 7 days of the KLS spell(this frequency started 1/2000, before that it was yearly. We now believe the frequency was caused by a chronic strep infection that was finally found by doing several more detailed intense tests looking for infections that would be running down her immune system.
Part of the theory from our most detailed in testing doctor, Dr. Guyer, was that our daughter had a genetic weakness in her central nervous system that was more prone to attack if she was experiencing an infection (or virus)and taxing her immune system thru stress, chemicals, lack of sleep, etc.We believe (both the Dr. and us)an infection in the central nervous system (brain) would cause inflamation and
swelling in the brain which controls the functions as well as giving an encephalitis affect)
along w/ hormonal inbalances, etc.
So...what we have learned is that its probably a real good idea to have your doctor have some detailed, not so common blood tests ran that would be looking for an underlined infection that might be causing this problem to maybe flare up more often. Sorry, I dont have the list of tests run at this setting but I can get them upon request.
Dr. Guyer did feel that she should stay on the Depakote that Dr. Echavarria prescribed, along w/ antibiotics to fight her strep. He said it could have been a number of other infections that could cause this but hers happened to be the strep.
I hope this may be of some help.
Feel free to contact me for more details.
May God bless your efforts as the patients endure this and the parents and care givers strive to help. We can be thankful it isnt life long! Closeness of the family and character building can certainly be a positive outcome of this huge trial.
Sincerely, PBledsoe
PS- I have a detailed 2 or 3 page report that covers symptoms, medicines, tests, etc. that she went thru. Let us know if anyone wants them.
- Re: KLEINE-LEVIN SYNDROME Den 9/01/00 (0)