Re: is on the diet! Still seizure free-weaning depakote

July 25, 2004

Hi Suzanne,

So glad that the diet is working well for so far! Her story is

much like our daughter's. (age 8) had her first seizure 2 years

ago. We struggled with meds for a year but they didn't work for us.

She's been on the diet for a year--seizure free from the start. I

diagnosed her with Doose after reading much about it and then joining

the Doose group. Our neuro has been reluctant to officialy diagnose

MAE but has always agreed that she fits the profile. Now

she " officially " agrees.

I'd say you put together a great keto team!! I am so glad that you

are weaning the Depakote. We stopped (no wean!)depakote ER (500mg

BID) during initiation after was in good ketosis for 12 hours.

It was amazing to see her " come back " to us. Our k. team advocates

doing the diet alone for at least 3, preferably 6, months. Most

drugs don't mix well with the diet. Depakote seems to be one of the

worst. Their experience has been that there is a " window of

opportunity " to stop or wean quickly from Depakote at the beginning

of the diet. It surely worked for us and it seems to be working for

you.... may it continue! I prayed for success with the diet, but

like you, I didn't expect it so soon (especially after struggling

with the meds). I waited for the rug to be pulled out, too, but

thankfully it's still there. I will always be thankful that we got

started on the diet when we did and that we dropped the meds.

I'm glad you found this group and also the Doose group. You will

find a lot of support in both places. Do keep us posted!

Cammie

> Hello everyone!

>

> started the keto diet on July 19th and hit good ketone levels

> by mid-afternoon so that she had her first 1/2 strength meal around

> 5:30p and another around 9:30p as her glucose levels were low. She

> did well through the nite and had her first full strength meal Tues

> AM and her glucose levels were within normal range by late PM, so

> they removed her IV and sent her home on Wednesday! While we

luckily

> avoided any vomiting issues, she was extremely tired and feeling

> hungry and complained of an upset stomach. We just kept the Disney

> movies rolling to distract her!

>

> Because her liver enzymes were slightly elevated,we pulled the

first

> depakote pill from her medication regiment on Tuesday afternoon and

> are scheduled to pull another 125 sprinkle capsule from her AM dose

> tomorrow. Amazingly, is still seizure free since July 1st.

> And, she at moments is beginning to talk more and express things

> she's never said. In fact, the other morning when I asked her why

> she ran outside--she responded " It's warm out here " as she stood in

> the bright sun. She then pointed to a shadow and explained

> that " It's cold over there. " I about fell over! I never expected

to

> see anything so soon and am waiting for the rug to be pulled out

from

> under us. In the meantime, we're busy weighing every meal and

> getting used to the " tiny " (ie. a bite) amounts of fruit or

> vegetables in each meal.

>

> Thanks again to all the start up suggestions. We are so relieved to

> have passed this first hurdle and hope 's success with the

diet

> continues.

>

> ne, mom to (4years old)

July 26, 2004

This is wonderful news and sounds a lot like Noah's story- he did great in the

hospital and was released early... he was seizure free when we left & is still

seizure-free today, almost 5 months later!

Mom to Noah, age 3 & seizure-free on the ketogenic diet

smclague claguelaw@...> wrote:

Hello everyone!

started the keto diet on July 19th and hit good ketone levels

by mid-afternoon so that she had her first 1/2 strength meal around

5:30p and another around 9:30p as her glucose levels were low. She

did well through the nite and had her first full strength meal Tues

AM and her glucose levels were within normal range by late PM, so

they removed her IV and sent her home on Wednesday! While we luckily

avoided any vomiting issues, she was extremely tired and feeling

hungry and complained of an upset stomach. We just kept the Disney

movies rolling to distract her!

Because her liver enzymes were slightly elevated,we pulled the first

depakote pill from her medication regiment on Tuesday afternoon and

are scheduled to pull another 125 sprinkle capsule from her AM dose

tomorrow. Amazingly, is still seizure free since July 1st.

And, she at moments is beginning to talk more and express things

she's never said. In fact, the other morning when I asked her why

she ran outside--she responded " It's warm out here " as she stood in

the bright sun. She then pointed to a shadow and explained

that " It's cold over there. " I about fell over! I never expected to

see anything so soon and am waiting for the rug to be pulled out from

under us. In the meantime, we're busy weighing every meal and

getting used to the " tiny " (ie. a bite) amounts of fruit or

vegetables in each meal.

Thanks again to all the start up suggestions. We are so relieved to

have passed this first hurdle and hope 's success with the diet

continues.

ne, mom to (4years old)

" 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!

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July 26, 2004

That is wonderful, Suzanne. My little grandson, Tanner, age 5 has started it

a few weeks ago and is doing just great too. No new seizures and he was having

them constantly. He had lost his speech and is now talking like a magpie. They

have weaned him from the diazapam and the dilantin and I think she wants to try

weaning him from the depakote after she talks to his nuerologist. He had a

little vomiting at the hospital but none since.

Hallie

is on the diet! Still seizure free-weaning depakote