I agree the seizures need to be documented. My son did a several day
study in the hospital with a camera on him. They can match the brain
activity with video of what the body is doing.

best to all of you, aL --- In
LandauKleffnerSyndrome@yahoogroups.com, "holly" <hzip@...> wrote:
>
> Hi Karen
>
> Where is the epi at? Who is it?
>
> We are in PENNSYLVANIA?
>
> Our daughter in 11 going to be 12 on Nov 16.
> We are very frustrated right now too.
> Our Neuro left after 8 years and the new one we have is not very
friendly
>
> we have been doing the depakote and valium. She is learning but
it takes alot
> She is in all regular classes in school but after school it is
read and study to retain.
>
> Her Language is delayed but she is great at writing.
>
> I would love to tell the EPI to go the He__ __ and get a new one.
> Can you be referred to someone who specializes in LKS?
>
> The other option is tell the EPI to put him in the hospital take
him off everything while on EEG for 3-5 days. YES DAYS and have them
chart and document the seizures and the spikes. I know that sounds
horrid but them they will see the seizure for themselves in there
hospital and can give meds when needed.
> GET THIS CRAP DONE. TELL THE EPI THAT he is not a pin cushion to
poke. That he is a human and that the Neuro and the EPI need to
communicate!!!
>
> Hope all goes well
>
>
> HOLLY
>
>
> ----- Original Message -----
> From: karen branham
> To: landaukleffnersyndrome@yahoogroups.com ; lks@yahoogroups.com
> Sent: Thursday, October 30, 2008 11:17 AM
> Subject: [SPAM][LandauKleffnerSyndrome] help
>
>
>
> hi everyone, ive posted a few times. My son has lks. The last
2 years have been horrid. At first it was extremly difficult to get
a dx. At one point after he had already been on both steriods and
diazepam we saw an epi who siad taht I need to just accept the fact
that he has developmental delays and took him off all the meds
steriods included cold turkey. He had a huge regression. that was a
year ago. All last year he did not learn at school and regressed.
In april we had veeg where we caught 3 different sz types and his
spike and wave discharges were at 60-70% So we started on high doses
of iv solu medrol with our local neuro. He ahs been on steriods
since then. Now we have been seeing a new epi and she is not of the
class of epii's that like or use steriods. i do not have a choice in
her our neuro sent me. She started weaning the steriods, I told her
to go slow like over 6 months. She felt 2 1/2 mo was good enough. 2
weeks ago he had the worse status sz I have ever seen or ever want to
see again. So our local neuro gave him more iv solu medrol. we saw
the epi yesterday adn she was horrified and said to not give him
anymore, not even oral. So hes going from having 6 doses of 400mg
each to now nothing. She also wants to see her own seizures. All
the veeg are not good enough because they are not at her hospital. I
am so distraught. I do not know what to do. #1 you dont just stop
steriods with no wean even if you dont have lks. #2 I am scared of a
regresion, of losing Jeremiah again. He is actually learning in
school this year and its is because of the steriods. He has made
gains in his speech. I am so titred and worn out with dealing with
this. I do not want to watch another bad regression and I do not
want to provoke more sz's. They hurt him so bad. I need help. What
do you think I should do.
> WrenB
>