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Old 03-07-2008, 10:06 AM   #1
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Join Date: Mar 2008
Location: Vermont
Posts: 26
Aurorasmommy HB User
NEWBIE: My 2 year old daughter...

Hello. I am new to this group. I wanted to introduce myself and my
daughter and share our story in hopes of getting support, and also
finding other moms who are going through the same thing!

My daughter Aurora had her first seizure 15 hours after her 2 month
vaccinations. (Of course the doctors feel that the seizure has no
connection! But I do not vax anymore, nor will she recieve anymore
ever!) When I had reported her seizure that day the doctors told me that
it probably wasnt a seizure that babies are very jerky and do movements
that sometimes look like seizures, and told me to stay home she was
fine! Well the jerky movements continued and 3 weeks later my daughter
had an Intercranial Hemmorage. She was hospitalized for 2 1/2
months.... when they admitted her she was seizing every 2-3 minutes!!!!
The bleed left her with a left sided weakness, but luckily that has
improved greatly. She is actually pretty advanced in language and
developement for her age (she is 2 1/2 years old now) she is at almost a
4 year level in language!!! I am very lucky that she didnt have more
injury results than she did from the bleed!

She was put on Phenobarbital and eventually weaned at 6 months old. She
had irregular seizures one about every 7-9 months apart... they didnt
put her on seizure meds because they were so irregular and wanted to see
if they would either become more regular to make sure they were INDEED
seizures! She has had follow up EEG's every 6 months which show that her
brain is having abnormal spikes in the area of the bleed.. (she has scar
tissue there).

I just had a baby 5 weeks ago, and Aurora had a seizure 4 days after I
had him. This was a Partial Complex Seizure. It lasted 2 minutes and
then she was sleepy and out of it for the rest of the night. We told
the Nuerologist and she said lets see if 1 more occurs... so within 1
week Aurora had another seizure, except this one went into STATUS and
she had to be brought to the ER by Ambulance and have the seizure
stopped with Diastat and other meds! It was scarey to see her in a
continuous seizure and I was so scared that it was going to leave her
brain damaged or dead! The seizure went on for 35 minutes!!! She
breathed through it, and she was fine when she finally came to! I thank
God that she was fine! But it left me on edge and worried sick! The
neuro finally diagnosed her with Epilepsy and she is on Keppra 1.75ML 2
times a day, its been 3 weeks and no seizures! They said the goal is to
have her seizure free for 2 years and hopefully she can grow out of
them! I am hoping and praying this will be the case!

Is there any other moms on here that have children who have seizures
from a brain bleed or injury?

Some of the questions I have are:

What are some side effects you have noticed on Keppra?
When you started having seizures were they irregular or alot?

Aurora's seizures are very irregular, she will go 9 months (OFF MEDS) without a seizure... she has been on the Kepprea now for 3 weeks.... This is the first meds she has been on since she was 6 months old.

Did you find the 1st meds worked?
Should I not take into consideration that my daughter doesnt have ALOT of seizures because it can change???

How long have you been seizure free on your meds?

Thanks everyone, I am really glad I found this forum... I am looking to find support. I am a complete mess over this... I am watching my daughter sleep at night, and I watch her so closely I give myself a stomach ache!

One other question, since my daughter had a STATUS seizure she has started to twitch in her early part of sleep... would you say this is normal? She is being set up for an EEG to make sure its not seizures... the Neuro said she really didnt think they were, but to make sure we would do the EEG... The twitching goes from a finger, to the foot, to the other hand, to the other foot... it usually goes away once she is in Deep Sleep... Opinions?

 
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diastat, keppra, phenobarbital



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