Zonegran

[Guest guest]

Jen is on Zonegran (100 mg 2x day-she weighs 60 lb.) to start the diet.

While it has a risk of kidney stones it is low. The main side effect is no

sweating but that may be dose related as Jen seems to be sweating. So far it

is a good drug for Jen. She has not been seizure free but we have been

weaning topomax. My neuro wanted to increase the Zonegran but I refused and

I'm glad I did as she is seizure free for two weeks now and off topomax for a

few days. We are waiting to see how she is on the drug alone before we start

the diet so we have something to compare to. We also started 500 mg taurine

and Jen has not had a seizure since then. It has been about 2 weeks so it is

too soon to tell if it is a coincidence. She is also on calcium-magnesium-

adult multi vitamin - & b6. Jen had a high fever yesterday-104 & still no

seizures. She behaves so well when she has a fever-anyone else have that

happen?

Joan-Mom to -11 years old-epilepsy, adhd, autistic behaviors, mild

cp, speech & learning problems, high functioning & sometimes charming.

Co-options Coordinator-Bergen, Hudson, Passaic Counties-north NJ

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[Guest guest]

Barb & Joan,

Thank you v.much for the info on Zonegran

and Keppra. If the Rohan's dr. insists on

trying another drug, I'm going to ask about

Zonegran. We started giving Rohan taurine(500mg)

and B6 82mg (apart from the B6 in the multi)

Saro....Rohan's mum

jscooptions@... wrote:

Jen is on Zonegran (100 mg 2x day-she weighs

60 lb.) to start the diet.

While it has a risk of kidney stones it is low. The main

side effect is no

sweating but that may be dose related as Jen seems to be sweating.

So far it

is a good drug for Jen. She has not been seizure free but

we have been

weaning topomax. My neuro wanted to increase the Zonegran

but I refused and

I'm glad I did as she is seizure free for two weeks now and off

topomax for a

few days. We are waiting to see how she is on the drug alone

before we start

the diet so we have something to compare to. We also started

500 mg taurine

and Jen has not had a seizure since then. It has been about

2 weeks so it is

too soon to tell if it is a coincidence. She is also on calcium-magnesium-

adult multi vitamin - & b6. Jen had a high fever yesterday-104

& still no

seizures. She behaves so well when she has a fever-anyone

else have that

happen?

Joan-Mom to -11 years old-epilepsy, adhd, autistic behaviors,

mild

cp, speech & learning problems, high functioning & sometimes

charming.

Co-options Coordinator-Bergen, Hudson, Passaic Counties-north NJ

-

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[Guest guest]

I was wondering how old is. The seizures sound like Infantile Spasms. They usually occur when they are sleepy and just waking up. They can be dx's with an EEG- there is a special pattern called Hyppstharythmia (sp?) They usually start in kids between 6-12 months old.

Kathy, mom to 2 1/2, and Cassidy 16 months, IS, SBH

zonegran

Hi all! We haven't posted in a while as we were on a good streak with seizure control. Well, the seizures are back with a vengence. has absence seizures and atypical absence seizures. He seems to be having these in his sllep and upon wakening. Once he is awake, he is fine. If he gets tired or takes a nap, he has them again. THey look like little head nods that last about 3 seconds. Anyone experience this?? We are getting ready to try Zonegran and I just wondered if anyone has tried it. Please let me know!!! Thanks, "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe