Re: how frustrating-Robyn (laverna)

[Guest guest]

on 22/7/04 2:34 PM, Laverna Moreland at fmoreland@... wrote:

Robyn,

We didn't get rid of the night seizures with Rebekah until we got rid of the

frizium entirely but she went through MAJOR withdrawl last summer. It was

worth the effort. the neurologist explained why they have withdrawl seizures

because the body basically has to rewire, relearn and manage without the

drug which takes a long time, up to 6 months after the drug is stopped.

Frizium was never meant to be taken long term and with Rebekah she developed

a tolerance to it and so it was causing seizures rather than stopping them.

We are presently weaning depakote which we are going very slow with to avoid

status......but the less meds the better the seizure control....that's been

our experience.

LaVerna, mom to Rebekah(10), on diet three years

We tried to wean Carlie Jae of the frisium in the first year and the

withdrawal seizures became serious and we decided not to attempt again. In

fact last fall we increased her dose of frisium.

she has been on the diet since March 2001. Maybe we need to try

again..however it would have to be in the hospital and I do not think I have

her pediatrician's support?

However withina few months of starting the diet we were able to wean the

depakote entirely

thanks Robyn