UPDATE from eeg to new neuro

October 21, 2004

Thanks everyone for the responses. It never occured to me that

the eeg should not be sleep deprieved, but by the time i read

them we were well into it. We kept her up almost til midnight

(She just couldn't do it) aand then we got back up at 4 am. the

eeg was scheduled at 10 am. She was much better then. At 9

she had a seizure. I really didn't think she would have one; thats

when keepong her awake was hard. We went in early hoping to

get hooked up early, but once she new we were getting buttons

she was able to stay awake.

First time ever she seized while being monitored! I was happy

and releived. the tech also told me that this is protocol for this

neuro. All other eeg's ordered from her on out will NOT be sleep

deprieved (I am still recovering). Poor had 5 seizures on

Tuesday (slept almost the whole day) and then had 14

yesterday. So far none today. She even had a seizure for the

new neuro! That also made me happy and I think it helped with

the tone of our appointment. He read the disc while we were

there.

Anyway the other good news is he gave the okay for the

phenobarbital wean! It will take 3 months (I'm sure this will not

be fun), but she will finally be off. She is on 30 mgs and we will

alternate 15 one day 30 the next for a month. The next month will

be 15 every day and the last month will be 15 every other day.

Then we are done. I will look up pheno weans later today. i

remember some stuff from the end of last year.

He ordered some blood work for three disorders Rett syndrome,

angelman, and fragile . He doesn't think she has them just

wants to rule out. Added pervassive developmental disorder

with new testing to be done to see if she has a high functioning

form of autism. (not aspergers, because I did ask aif that is what

he thought and he said no). We were happy with him. He spent

2 hours with us and I felt as though he was very thorough.

Listened and asked questions to help fill in blanks. Still can't

decide if the MCT oil is doing any good. I'll give it another week.

I am thanking God that we moved here a wonderful ped. and

neuro. All I could ask for now are NO seizures!

Thanks for reading and being supportive.

~

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