jackie update # 2003! keto to atkins-moving along slowly.

[Guest guest]

Well we've met with the Dr, and are all still standing. Took me a day or so to

process the imfo. Short version:

we are staying where we are medically (2 depakote,1/2 kepra in the am, and 2

depakote, 1/2 kepra in the pm).

Jackie is going to have an eeg and blood work on Monday in the pm, and we should

have the results in a day or two after that. (May have to beg for the results

since the dr is going on vacation for two weeks-am very good at begging for

numbers!)

We are going to be shifting from the keto to the Atkins. We are shifting her

ratio down for 2.0 to 1.95. We will then drop either .05 a week or every ten

days depending on how Jackie tolerates the change.

We are continuing the protein push. Dr. disagrees with this, feels that the

protein doesn't matter, but he is letting me have my way.

We are starting PT sometime in the next two weeks (need to do some calls for

scheduling.)

At the moment we are not going to CHOPS since they have been consulted about J,

and they appear to feel that she is no longer on the keto (too low a ratio!),

and we should either think of going up on the ratio (NOT according to JACKIE!)

or getting off, slowly.

We are choosing to get off the keto slowly.

Hopkins has a 4 month wait for second oppions, and we are considering going

after that, but will wait for the new year.

It is possible that Jackie is experiencing a " honeymoon " on kepra. We will know

this in the next two weeks or so. If that is the case, we need to re-evaluate

what we are doing, an may increase her kepra dose.

Jackie appears to be healing. THis does not mean she will remain seizure free

(as we all know the beast is notoriously difficult to keep caged), but it not

mean she won't. She is a little over 8 and has fought the beast for four years

+ of her life. It is a question of time, perhaps we are in the right spot or

not. Time will tell.

So the short version is " we are staying the course " with a modification towards

reducing the diet, and hoping that she does not need any more kepra or depakote.

Kepra is not addictive (so says the Dr), and should not affec the cognitive

ability. Hmmmmm, the dr and I do disagree on some things!

Depakote does affect muscles and Jackie needs to build up her strength.

THink I got all of it.

Anyway, that's the current version, and we are taking it all one day and night

at a time. All quiet on this front, but you never know. We wait and see how

the night goes, again.

Wishing you all a quiet night (us too!)

mother of Jackie

age 8

kepra and depakote

keto since 12/10/01 moving to Atkins (slowly!)