Search the web
Sign In
New User? Sign Up
LandauKleffnerSyndrome · Landau-Kleffner Syndrome
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Hear how Yahoo! Groups has changed the lives of others. Take me there.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
Unsure!   Message List  
Reply | Forward Message #738 of 1721 |
Re: [LandauKleffnerSyndrome] Unsure!

My daughter has a varient of LKS. She is not a case book child and she had a cortisol test and was seizure free for 10 days. She has never been seizure free. She has been on ACTH for 11 months and the changes in her have been amazing. She had severe CAPD and now it is mild, she is talking in short sentences and phrases and she is doing great with seizures for the most part. If you want to read up on our journey look at www.caringbridge.org/visit/sedonamarieseideman . I kept pretty good records on there of our ACTH journey. Please feel free to contact me directly donabug2001@...
 
Gina

--- On Fri, 1/9/09, grove_brandy <grove_brandy@...> wrote:

From: grove_brandy <grove_brandy@...>
Subject: [LandauKleffnerSyndrome] Unsure!
To: LandauKleffnerSyndrome@yahoogroups.com
Date: Friday, January 9, 2009, 6:20 PM

Hello. This is all new to me and we are still in a diagnois stage. On
December 19,2008 My healthy above average son changed completely. A
child how has been talk since he was 5 mos old stopped talking for the
most part. He runs around our house in his own world. I have been
given since diagnois in the last 30 days the last one is Landau
kleffner. I don't agree after reading everything. What have your
responces been. I live in Pennsylvania, what hospitals would you
reccommand. On the 26 they gave my son cortisol to do a test and for a
half hour we had our son back. When I talk to our doctor he stated
that giving him cortisol long term would do more damage then good.
Please any advise would be helpful!




Sat Jan 10, 2009 2:37 am

donabug2001
Offline Offline
Send Email Send Email

Forward
Message #738 of 1721 |
Expand Messages Author Sort by Date

Hello. This is all new to me and we are still in a diagnois stage. On December 19,2008 My healthy above average son changed completely. A child how has been...
grove_brandy
Offline Send Email
Jan 10, 2009
2:20 am

My daughter has a varient of LKS. She is not a case book child and she had a cortisol test and was seizure free for 10 days. She has never been seizure free....
Gina S.
donabug2001
Offline Send Email
Jan 10, 2009
2:37 am

where in Pa are you?? We live in western PA. I highly reccommend Dr. Gupta at cleveland clinic. He saved my daughter. We were going to Children's of Pittsburgh...
Martha
mrth_ryn
Offline Send Email
Jan 11, 2009
2:02 am

We live in Central Pennsylvania, Williamsport. Whereis Cleveland Clinic? ... Dr. ... for ... developmentally ... recovery ... and ... stage. On ... completely....
grove_brandy
Offline Send Email
Jan 12, 2009
11:35 am

Wow - Williamsport is a long way from here. You are about 4 hrs away from me (stoneboro, Pa, which is halfway between Erie and Pittsburgh) I think, and then...
Martha
mrth_ryn
Offline Send Email
Jan 13, 2009
3:25 am

This mess just gets more frustrating. I didn't hav much faith in medicine and I have lost that. Geisinger who gave us the diagnois of Landaukleffner is now...
grove_brandy
Offline Send Email
Jan 16, 2009
9:08 pm

OMG! If it is helping then DO NOT take him off. Insist that he stays on for a longer period. Why are they questioning the diagnosis? Did his EEG show the spike...
Sam
samcambridge
Offline Send Email
Jan 16, 2009
10:00 pm

Who went to geisinger? Was it danville? Dr. Jill Gotoff Email me if so I will tell you more directly holly hzip@... ' ... From: Sam To:...
holly
koscakh
Offline Send Email
Jan 16, 2009
10:21 pm

Yes - as Sam says!!! Do not take him off quickly it may not allow you to get control in the future. Many kids have only one chance at steroids. How can they...
Martha
mrth_ryn
Offline Send Email
Jan 19, 2009
3:42 am

Apparently Landau kleffner syndrome has a specific eeg pattern. My son doesn't have the pattern. After My appointment on 1/19 I was told that he just had a few...
grove_brandy
Offline Send Email
Jan 24, 2009
12:52 am

who are you seeing at Hopkins? That's where I take my daughter for the LKS. She's medicated with Keppra, Lamictal, and Paxil as well as Risperdal for the...
Terry Street
groovy1202
Offline Send Email
Jan 24, 2009
3:27 pm

Hello, My son was diagnosed at 3 years old after losing all language. I wonder why you don't agree with the diagnosis? It sounds just like LKS to me. I totally...
Sam
samcambridge
Offline Send Email
Jan 12, 2009
2:05 pm
Advanced

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help