Re: Thanks for your feedback/brain surgery question

[Guest guest]

Hi there! Well Sophia is doing well overall, but her neuro isn't.

She had one breakthrough seizure this month - the first in a year

and a half - and he's calling it a loss of seizure control and is

talking about brain surgery again. I'm just sort of letting him do

the testing but I really can't take it seriously. It seems like

contemporary thought is that if you have seizure control with meds,

you don't operate. And I know that it could improve her chances of

development and being off meds, which I want, I'm just not sure this

is the breaking point, you know? I'm just so confused.

After her seizure this month we raised her meds, which is also the

first raise since we started this drug combo. She's currently at

500mg a day of depakene/depakote and 100 mg of Topamax. The depakene

is maxed out for us and if she has more seizures, we're adding in

Keppra and dropping the Depakene.

Monday we're going in for a three day video eeg and two weeks later

she gets her fourth mri. And in the meantime I'm waiting for a call

back from Children's in Philly for a second (really the fourth!)

opinion from them. I think my doc is looking for someone to either

back him up or shoot him down on the surgery idea.

So here's my question for the group - have any of you gone the

surgery route? was it because of uncontrollable seizures or just

aggressive treatment? where did you have the surgery, and did it

help?

And here's my question for Rose - how's doing? have you gotten

to try any alternative treatments? what's going on with his

seizures? Are you having a fun spring????

Hope everybody is doing well and staying healthy!!!

and Sophia

> > >

> > > Thanks to C, Steve, Joanne, Sidney's mom/dad, dana & Dom

> for

> > > your replies re diagnosis of your child and how they changed.

I

> > guess

> > > it may just be that I am thinking about this all too much and

> miss

> > the

> > > old but I love my boy heaps!!!!and will do the best I can

> for

> > him

> > > even though at times I do not know what he needs really - as

you

> > guys

> > > know only too well.

> > >

> >

>