Re: Re: Back on the list--Rose-Marie

[Guest guest]

Yep is still doing well thanx - a week and a half to go now before his

12 mth seizure free anniversary rolls round - Xmas Day actually - ho ho ho

I remember 's high carn levels now, 's were too for a spell there,

we supplemented with no more than the rec amount, like we never went above 50

mgs per kg, and before we knew it he was over 3 times the normal limit. Bizarre.

The supps got withdrawn pretty quickly once he ended up in hosp with the nasty

seizures, and then we had to struggle to get the levels back up in a theraputic

range again, no happy medium here........

He is nearly there now though after weaning half of his dep in the past 3 mths

- which was what was causing the big dip.

It would be interesting to see what 's levels are at now she isn't on

the diet, was she on supplements when she was up at those high levels?

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

From: don_gal@...

Thanks ,

It's so good to be back! Hope is doing well...he was having such an

excellent stretch when last I heard.

's on a touch of Keppra (250mg/day) and just went up to 125mg/day with

Lamictal. Her neuro hopes to give her some coverage to improve the quality of

her life while we wait for the VNS to kick in, so he's building her Lamictal

back up.

Carnitine levels were extremely high each time they were checked (four times

the maximum recommended levels) but never were connected with her cramping. It

doesn't rule out the possiblity, though, that excess carnitine levels could have

been the cuplrit. One specialist was considering it but never got cooperation

from our clinic as to lab reports. We havent' had her carnitine checked since

coming off the diet.

Thanks for the welcome, !

Rose-Marie

mom to , age 8

Maple Valley, WA, USA, where the wind is howling so big at the moment that

we're hoping to keep our power