Re: Topamax/Doose syndrome/diet--sorry long!

July 22, 2003

Hi ,

has Doose syndrome, I have quite a few papers etc available on

meds/diet and Doose.

Do you want me to send them privately? Or do you want me to email her? Or

shall I do a spiel on here instead

Happy to help either way,

Topamax/Doose syndrome/diet--sorry long!

> Hi everyone!

> I've got a friend who's having some problems.

> Here's here background:

> Ashlee is almost 4 yrs old. Diagnosed with Doose Syndrome. She's been on

> Topamax for a while and it's been the most successful drug for her.

>

> Here's the problem.... The day before they were originally supposed to

start

> the diet, my friend cut the carbs from her daughter's diet. She woke up in

> the middle of the night with dark ketones and throwing up. Of course the

> neuro and dietician were convinced her daughter just had a bug though my

> friend felt like it was from the ketosis (do they never listen to the

> parents?????)

>

> So they initiated the diet a few weeks later and told my friend not to cut

> the carbs the day before. During the hospital stay they started Ashlee on

a

> 4:1 ratio. Same thing--she produced dark ketones almost immediately. She

was

> okay when she left the hospital, but wouldn't eat and started vomitting.

> Within 48 hours they were in the ER and Ashlee was in severe acidosis. She

> had to stay in the hospital a couple days and obviously they stopped the

> diet.

>

> They checked for metabolic disorders and did lots of blood tests. All

> negative except for a slightly low bi-carb (and I have no idea what that

> means). The neuro came to the conclusion that Topamax was the culprit. So

> they decided to re-initiate at a 1:1 ratio at home (with the dietician &

> neuro). Well, by the first day, Ashlee stopped eating and was throwing up

> again. Once again they had to take her to the ER. I don't think she was

even

> showing ketones, but her bi-carbs were even lower than before.

>

> My friend would really love to be able to try the diet with her daughter.

> Here's my question, particularly for those who have children with Doose

> syndrome. What are other drugs that are effective? Obviously Topamax,

Ashlee

> and the diet are incompatible. No other drugs have worked well for her. I

> don't think they've tried Zonegran, but I think that would put them in the

> same boat as Topamax (because of similar properties). Has anyone tried

> Felbatol with Doose syndrome?

>

> Any other suggestions for my friend? I'm going to forward her the replies.

> thanks,

> ashley

July 22, 2003