Re: Drug weaning on the keto diet-revised -survey

[Guest guest]

Joan -- I had one more thoght this morning. Since so

often, the docs don't acknowledge the side effects --

do you think it would be worthwhile to also gather

brief statements on people's experiences with the

various meds. I'm not thinking of detailed write-ups

-- for instance, mine would be:

Tegretol -- " lost her joy "

Depakote -- throwing up and " out of it "

Topomax -- completely zeroed out, lost nearly all

skills

Lamictal -- aggressive, sleep problems, headaches

Your thoughts?--D

--- jscooptions@... wrote:

> thanks D-good editing!

>

> Give a brief history of your child if you can

> (optional). Leave your name &

> email addy at the end if you wish to be contacted

> with questions or advice.

>

> What drug did you wean and how many mgs was your

> child on?

> How long did you wait after you started the diet ?

> Did you wean when you started the diet or before

> starting?

> Was your child completely seizure free on the diet

> before weaning?

> How many mgs of the drug did you wean at a time?

> How often did you drop the drug dose?

> Did you follow your Doctors schedule or make your

> own?

> How long did it take to complete the wean?

> If you stopped the wean at what point did you stop?

> Did you add back drugs or take a break and continue?

> What ratio was your child on when you started the

> drug wean?

> Did you change the ratio during the wean?

> Did your child have " withdrawl " seizures?

> On what days after the drug drop did your child have

> " withdrawl " seizures?

> Did your child have behavior problems due to the

> wean?

> How long did it take for your child to be

> seizurefree?

> How long did it take for your child to behave

> normally?

>

__________________________________________________

[Guest guest]

> brief history

Hannah had sz from soon after birth, but we didnt realise what they were

till 10weeks of age. Six drugs failed to gain control, although most helped

a little at least for a while.

> What drug did you wean and how many mgs was your child on?

Lamictal, 200mg a day (100mg morning and night)

> How long did you wait after you started the diet ?

Three months after starting the diet we felt that control had improved

enough to try a drug wean

> Did you wean when you started the diet or before starting?

After

> Was your child completely seizure free on the diet before weaning?

Not seizure free, but having about half the sz she was having prior to the

diet

> How many mgs of the drug did you wean at a time?

Started with 50mg drop, but it was too much so continued with 25mg drops

> How often did you drop the drug dose?

Almost every two weeks, but really only when stability was achieve after a

drop

> Did you follow your Doctors schedule or make your own?

Started with the doctor's, but realised it was too fast, and then did my own

rate

> How long did it take to complete the wean?

3 1/2 months (doctor's rate would have been 1 month)

> If you stopped the wean at what point did you stop?

When the drug was totally weaned

> Did you add back drugs or take a break and continue?

Neither. Did one continuous wean

> What ratio was your child on when you started the drug wean?

4:1

> Did you change the ratio during the wean?

No, only after

> Did your child have " withdrawl " seizures?

YES

> On what days after the drug drop did your child have " withdrawl " seizures?

10 days after the wean ws complete

> Did your child have behavior problems due to the wean?

no

> How long did it take for your child to be seizure free?

She never was sz free, even after the wean, but her sz reduced even further

once the withdrawals finished.

> How long did it take for your child to behave normally?

Apart from withdrawal sz (which lasted over two months) there was no other

behaviour that changed

(Hannah's mum, Australia) gkrbh@...