, about & my Crystal Aquielle...

[Guest guest]

- I feel for you, I really do. They gave my son Carl, Tegretol. He

has Tourettes Syndrome & a BAD attitude. It definitely made him worse. He

was downright scary when he was on the stuff. I took him off it pronto. I

was afraid he would hurt someone !!! I really think she's having a bad

reaction to one of the drugs or the combination of both. My daughter Crystal

Aquielle's initial diagnosis was Cerebral Cortical Dysgenesis. She was

placed on phenobarbitol when she was a baby. She went toxic on it, before

she was finally removed from it. It didn't stop her seizures ( infantile

Spasms ) just made them harder to detect. She stopped nursing & would sleep

all day & all night. It scared the sh*t outta me !!! Now she's having

complex-partial seizures. She's presently on Keppra, Depakote, & they're

introducing Topomax. The seizures are definitely NOT improving. I was told

yesterday, by her neurologist's nurse, that it's going to take awhile for

the Topomax to get to a therapeutic level. I want them to reduce something

else, while they're introducing it. I can't see how it can hurt. I think

that the combination of meds is NOT good for my baby...She'll be going along

& just stop & stare. It's heartbreaking to see...

Anyway, good luck with the meds. Crystal got the famous rash from Lamictal,

so it's not a good choice for her. Other kids do very well on it. If they

put on Topomax, you have to watch her appetite. It affects it, makes

them not want to eat. It also effects speech ( messes it up ) & can effect

balance. It's already doing that to Crystal...Her balance wasn't the

greatest to start with. Now, sometimes she stops & grabs onto things, so as

not to fall < sigh > ...

Give your Angel a great big {{{ HUG & KISS }}} for us...

Love & Light...

- mommy of Crystal Aquielle - 4 years old - Bilateral Perisylvian

PMG - Grade 3...