Sam,
I feel our neurologist is just playing a guessing game with meds for Kyra. First we tried Klonopin, she was on that for 5 mos, and continued to have problems, as well as an increase in her ADHD. Now, he wants to try Lamictal before we go with the corticosteroids. We are still researching the corticosteroids and are worried about the side effects.
Sadly, Kyra has continued to have feeding problems, lost nearly 10 pounds and we had to insert a ng tube each night for feedings. Just last week that was switched to the more permanent stomach feeding tube.
Since starting Klonopin, Kyra hasn't eaten. We are searching and searching for any information we can find on children with LKS and feeding issues. If anyone can help, I'd really appreciate it. In the meantime, the only nourishment she receives is through the feeding tube.
We are seeing a tremendous amount of ups and downs on a day to day basis. This includes her speech, her adhd, her behaviors. Eating just seems to have completely been lost.
If anyone has any thoughts, please email me!!
Thanks,
Terry in MD
----- Original Message -----
Sent: Sunday, September 02, 2007 5:40 PM
Subject: [LandauKleffnerSyndrome] Re: Adults w/LKS
Hi,
My son was diagnosed at age 3 and a half, he has just turned 7. We
tried the Prednisolone after his diagnosis, and this cleared his EEG.
As we reduced the dose, the spike wave activity returned and could
not be controlled again, even after upping the dose again.
What I am saying is that most children only get one chance with
Prednisolone. If it is reduced too quickly, it may not work again,
even if it had previously.
Tai was diagnosed in Paris by a Professor Dulac. His treatment of
choice is another steroid, Hydrocortisone. He also recommends that
the treatment should last no less than a year. Of course he is very
aware of the side effects, but he also knows how devastating this
illness is if it isn't treated. There is a much smaller chance of a
relapse if the treatment lasts for a year. Tai was on Hydrocortisone
for 2 and a half years, his EEG cleared again, and he has slowly
regained his language. We are so pleased with his progress.
I'm sorry I can't be of more help with the IVIG, I don't know much
about it.
Does your neurologist have much experience in treating LKS or other
related disorders? I think its very important that the neuro has
successfully treated it before.
If you would like my neuro's email address for advice, please let me
know, he is happy to respond to other parents.
Sam
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