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Reply | Forward Message #741 of 1721 |
Re: Unsure!

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 and got nowhere. Hannah was on prednisone for
about 9 months and she regained speech. She is still developmentally
delayed but she can talk and understand. It is a long road to recovery
but I feel that steroids are one of the best chances of recovery and
the benefits far outweight the side effects!! - MarthA

--- In LandauKleffnerSyndrome@yahoogroups.com, "grove_brandy"
<grove_brandy@...> wrote:
>
> 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!
>





Sun Jan 11, 2009 2:02 am

mrth_ryn
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Message #741 of 1721 |
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Jan 12, 2009
2:05 pm
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