Re: Carnitine--Rose-Marie

[Guest guest]

Below in ****'s Rose-Marie,

----- Original Message -----

From: don_gal@...

Glad you are seeing a moderation in 's carnitine levels as he comes

down off Depakote. That ought to help energy levels. Is the plan to get him

off the Dep completely?

***Yes - his treatment regime is keto diet, dep and topomax, and originally

it was going to be topomax we were going to try weaning due to the acidosis

probs it causes with the diet, and that was planned for Dec/Jan, ( so if he made

it a yr seizure free) but in Sep his carn levels dropped to the lowest they have

ever been, and the neuro decided because of that, it was going to be the

depakote we weaned first. Which I was ok with, I don't actually think it does

anything beneficial for him seizure wise anyway, never have done, neither does

his neuro - he wasn't the one to increase it back up again last yr. But we'll

see what happens as we near the end of the wean. His current dose is prob not v

theraputic any more - he is only at 9 mgs per kg, so I doubt it is doing a lot

in an AED fashion, but obviously I won't know for sure until it has all gone.

Yes, we should have 's carnitine levels checked. She had them taken

once long before the diet at age 2 (Carnitor was a grasping-at-straws treatment

for her syndrome at the time, but our neuroped wouldn't prescribe it unless she

was low) and even back then she was high (though I don't know just how much).

It would appear to be an odd little metabolic thing with her. Strange, too,

because there have been times in her life when meat was pretty non-existent in

her diet and still carnitine levels were excessive.

***Hmmm, def some possibility of a sort of red flag there metabolically then

isn't there - have you had a metabolic specialist involved?

But right now I am limiting her blood draws to only those that might be

urgent...after monthly checks for the keto diet, she's gotten awfully leery of

pokes. Can't blame the kid.

**Nope, not at all. These kids and the blood tests they have to endure, ugh.

has got to know the terminology well enough to become confused with his

spelling a few weeks ago - a word on his spelling list was vile, and his first

instinct was that they meant as in vial, ie - the tube the lab keeps the blood

in

I do think a year of seizure-free is about the best Christmas present a

parent could ever wish for! You certainly deserve it. Merriest of Christmases!

***Thanks Last Xmas was pretty great too, his first completely seizure

free day after the Nov/Dec hospital chaos, but he was pretty weak, still had a

NG tube in etc, and back then we didn't know of course if the seizure free day

was just a one-off or whether that was gonna keep happening. Thankfully it has

been the latter, but I'm still not confident enough to do anything like speed up

his med weans etc, I'm hoping that slow and cautious will win the race for him.

I hope manages a good Xmas day too, when is the VNS likely to be

effective? Or is there no set period for that? Don't know much about them, still

very scarce here in NZ....

Rose-Marie,

mom to , age 8,

Maple Valley, WA USA