Rhonda--Weaning meds while still seizing

[Guest guest]

Thank you so much for the response, Rhonda. Can I assume, then, that Shan

was still having seizures when you did the med wean?

Your points make such good sense...I guess I'm just plain scared, tho, as

Skyler has a nasty history of status. We would, of course go very s-l-o-w-l-y

on

the benzos and barbituates. (We actually have come down from 5100 to 4500 mg

on the Felbatol since beginning the diet as we saw true toxicity <insomnia

attacks>).

Glad to hear Shan is doing well. Tell her to keep up the good work.

Tracey

[Guest guest]

Tracey,

Yes, Shan was having seizures when we started weaning. Her pattern of

several awake complex partial seizures every 3-4 days did not change for 2-3

months (have to pull out the calendar that we kept records on to be sure

...... where that is who knows ). What did change was extremely improved

recovery from a seizure and less intensity. The Klonipin was weaned in the

first 2 weeks (was on a very low dose) and the Topamax took about 3 months.

I'm fairly sure that the awake seizures disappeared with the weaning of

Topamax. Shan had Tegretol on board and we had to quit weaning the Topamax

for a couple weeks to bring down the Tegretol due to suspect drug toxicity.

During all of this the sleep seizures persisted. We did eventually wean all

her meds and the sleep seizures increased in intensity. Two weeks before

weaning the last of the Tegretol the sleep seizures had suddenly improved,

but they came back after completely weaning the Tegretol. About 3 weeks

later we tried a very minute dose of Lamictal to reduce the sleep seizures

(sleep seizures caused her left side to be nearly paralysed). The lamictal

triggered her to have 1-2 late afternoon awake drop seizures. Those

disappeared immediately after quitting the lamictal. We ended up giving

back a small dose of tegretol (later switched it over to its close

brother/sister Trileptal) and now Shan is experiencing weeks, sometimes a

month, without known sleep seizures.

Rhonda (mom to Shan, age 9, keto/Atkins kid over 2 years, doing great)

Thank you so much for the response, Rhonda. Can I assume, then, that Shan

was still having seizures when you did the med wean?

Your points make such good sense...I guess I'm just plain scared, tho, as

Skyler has a nasty history of status. We would, of course go very

s-l-o-w-l-y on

the benzos and barbituates. (We actually have come down from 5100 to 4500

mg

on the Felbatol since beginning the diet as we saw true toxicity <insomnia

attacks>).

Glad to hear Shan is doing well. Tell her to keep up the good work.

Tracey

[Guest guest]

Tracey,

Yes, Shan was having seizures when we started weaning. Her pattern of

several awake complex partial seizures every 3-4 days did not change for 2-3

months (have to pull out the calendar that we kept records on to be sure

...... where that is who knows ). What did change was extremely improved

recovery from a seizure and less intensity. The Klonipin was weaned in the

first 2 weeks (was on a very low dose) and the Topamax took about 3 months.

I'm fairly sure that the awake seizures disappeared with the weaning of

Topamax. Shan had Tegretol on board and we had to quit weaning the Topamax

for a couple weeks to bring down the Tegretol due to suspect drug toxicity.

During all of this the sleep seizures persisted. We did eventually wean all

her meds and the sleep seizures increased in intensity. Two weeks before

weaning the last of the Tegretol the sleep seizures had suddenly improved,

but they came back after completely weaning the Tegretol. About 3 weeks

later we tried a very minute dose of Lamictal to reduce the sleep seizures

(sleep seizures caused her left side to be nearly paralysed). The lamictal

triggered her to have 1-2 late afternoon awake drop seizures. Those

disappeared immediately after quitting the lamictal. We ended up giving

back a small dose of tegretol (later switched it over to its close

brother/sister Trileptal) and now Shan is experiencing weeks, sometimes a

month, without known sleep seizures.

Rhonda (mom to Shan, age 9, keto/Atkins kid over 2 years, doing great)

Thank you so much for the response, Rhonda. Can I assume, then, that Shan

was still having seizures when you did the med wean?

Your points make such good sense...I guess I'm just plain scared, tho, as

Skyler has a nasty history of status. We would, of course go very

s-l-o-w-l-y on

the benzos and barbituates. (We actually have come down from 5100 to 4500

mg

on the Felbatol since beginning the diet as we saw true toxicity <insomnia

attacks>).

Glad to hear Shan is doing well. Tell her to keep up the good work.

Tracey