new to the group

[Guest guest]

Hi - I am new to this group. My daughter Jenna is 10 years old and

has been diagnosed with generalized epilepsy since she was 6. Her

first seizures however were when she was 4. But at that time they

could not diagnose her properly and told us if it happens again come

back. Well 2 years later she had another seizure and then was

tested again - and this time the EEG showed the generalized

epilepsy. At that time she had had 4 drop seizures (tonic-clonic

they believe) and no absences. The dr right away put her on

depakote and from there on it was all down hill!!! She started

having absence seizures and it got to the point where she was almost

catatonic at times due to the absences. We had her admitted for a

24 hour eeg (because the dr didn't believe ME that I was seeing so

many of these seizures) and she had over 800 in 24 hours. Two years

ago that dr basically threw her hands up in the air and said there

is nothing more she can do for Jenna.....and 5 different meds

later...we then tried to go to s Hopkins to look into the diet

and our insurance co sent us to CHOP in Philly. The first year we

put her on the Zonegran and she was still on the Zorontin (she has

been on that since she was 6-although it does NOTHING for her) after

the first year - she became almost catatonic again and was having

over 10,000 absence seizures A WEEK so we put her on the diet July

14, 2003. We just hit the one year mark and Jenna was seiz free

from Sept 03-Dec 03. In Jan 04 she became sick every other week

with stomach viruses, etc and was even hospitalized twice. The

absences have since returned and she has been put back on all her

meds - she is even on more meds than pre diet!!!!

Sorry for the rambling - I just want to give as much info as I can

so that I can speak with people in the same or similiar situation.

This has been a long year on the diet - many times wanting to just

QUIT - but keep trying because we want her seiz free AGAIN!!!!!!

I look forward to meeting the wonderful families in the group and

sharing and learning from each other.

Tracey, Jenna's mom (10)