----- Original Message -----

From: Jennifer Gager

To: LandauKleffnerSyndrome@yahoogroups.com

Sent: Wednesday, September 05, 2007 9:20 PM

Subject: Re: [LandauKleffnerSyndrome] Re: Adults w/LKS

Terry,

My son has never been diagnosed with LKS, but what he has (developmental aphasia) is the closest thing to LKS that I can find ANY kind of support/information. Hope this makes sense. I just skim these emails, but when I saw you mentioned "feeding problems" I had to ask about it. What do you mean exactly? My son hardly eats anything (he just doesn't LIKE anything). He has steadily gotten worse. Anyway...just had to ask if you could clarify this. :o) The only meds that my son is on right now is Imapramine (for Anxiety issues) but it actually did a lot for his ADD.

Thanks! Jenn

On Sep 5, 2007, at 7:59 PM, Martha wrote:

Terry - The prednisone was our miracle. My daughter, Hannah was on
pred at age 7 (She is now 10)for about 9 months ( Iwanted it longer)
it has worked for her with only massive weight gain as a side
affect. As we weaned the pred we added lamictal and clonazepam at
night. She has not regressed. She has most of her speeach back just
word finding problems and major reading issues. I would do the pred
again in a heartbeat!! - Martha

--- In LandauKleffnerSyndrome@yahoogroups.com, "Terry Street"
<terryst2@...> wrote:
>
> 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 -----
> From: Sam
> To: LandauKleffnerSyndrome@yahoogroups.com
> 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
>