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ACTH injections and Landau Kleffner
Mon, 08/27/2007 - 15:29Topic: Epilepsy.com Help
Dear All:
My son was recently diagnosed with what his pediatric neurologist thinks is Landau Kleffner. After a lot of research and discussion both with our son's pediatric neurologist and amongst ourselves, we decided to have ACTH steroid therapy started to help bring back words that he lost at 18 months and has not yet regained. To date, our son has been on the steroid for about a 1 1/2 weeks and he is being affected by many of the side effects. He is 32 months old.
While we don't want our son to suffer through these side effects, and of course, if they become extreme, we will need to either stop or lessen the dosage, we are hoping that we've done the right thing. Since last Friday, we have been calling his doctors, taking him to the doctor's offices and watching these side effects take toll on his little body.
If any, what have been your experiences with Landau Kleffner and steroid therapy?
Any success stories?
Always,
Kim
Comments
Re: Re: ACTH injections and Landau Kleffner
Submitted by kimaling on Mon, 2007-09-10 - 12:24
Hi Lisa - Thank you so much for your response. We also know about the surgery and I guess like you and your family, have tried the steroid therapy first.
My question is, prior to the LKS diagnosis - did your child ever speak? and if he did, how was his speech? Was he first diagnosed with PDD or autism? How did he manage (to communicate) prior to the diagnosis, treatment and surgery?
I really appreciate you sharing your story with me and most of all, AM SO HAPPY that your sweet son is now experiencing a normal life. Our children - no child deserves this..but thank goodness there are options.
Kim (Kimaling)
Re: ACTH injections and Landau Kleffner
Submitted by markgoldrup on Mon, 2012-11-19 - 03:00
Kim,
It's been five years since you posted this message on epilepsy.com and I'm not sure if you are still active on the forum, but I'm hoping you will get an email alert or something. My daughter's case is very similar to your son's. She had begun saying about 10 words by the age of 18 months, then slowly lost them all by the age of 24 months. She is nearly three now and has not spoken in a year. A recent EEG sleep study found "intermittent abnormal electrical activity" in the part of the brain that controls speech. The pediatric neuroligist said this is not classical LKS, which has constant abnormal activity, but close enough to attempt the same treatment plan. He prescribed an anticonvulsant, which my daughter has now been on for a couple of weeks. We notice some difference in terms of increased babbling and apparent response to her name and words, but that could just be because we are now watching her like hawks.
Anyway, I would LOVE to hear what happened with you and your son, since you seem to be five years down the road from where we are now. What treatments did you find most effective? How is he doing now?
Re: ACTH injections and Landau Kleffner
Submitted by LovelyLisa on Mon, 2007-09-10 - 08:42
Kim, Hi my name is Lisa I have a 15 year ole son who 8 yrs ago was diagnosed with LKS.To make a really long story short he had the MST surgery And is now a normal 15yr old with no meds or side effect from the surgery. But to answer your ? about sreroids yes he was on them for a very long time and they did help for a short period.If you have any more questions feel free to email me. Lisa