I have also posted this on 'Rare Epilepsy Groups'page, so please
forgive me if I have caused your mail box to overflow!

Hello Everyone,

We received great news today - Taylor's (LKS) 48 hour ambulatory EEG
came back clear!!!!! Yippee.

We believe it has been a combination of Frisium and Prednisolone
that has achieved this result.

Now I have 100 questions about the future that I am hoping some of
you may be able to help us with:

Taylor has begun to babble and say a few words, wee wee, wow, where,
dada, no, mama....how long after the EEG was cleared did it take for
your child to make significant progress with their speech. (Don't
get me wrong, I think our little bunny is doing an amazing job but I
am now wondering how long it will take for her to regain age
appropriate langauge - if ever).

The docs have mentioned beginning to wean the steriods - albeit
slowly. She is currently on 2mg/kg/day and the idea is to get her
down to 1 mg/kg/day. I am well aware that doing this too quickly,
could cause a regression, or worse...so the question is how fast, is
too fast to wean? Over what period of time should she be weaned?

As Taylor acquired this awful illness at a young age, the docs were
talking future strategies should the CSWS return. These included
immunogloblin therapy, ACTH (I think)????? what can you tell me
about these things?

Has anyone weaned off steriods and maintained a clear EEG???

We are so excited by our great result today - cautiously excited
anyway.

Peta

Send instant messages to your online friends http://au.messenger.yahoo.com