Hi Christine
Ok my epilepsy will be different to your daughter's but I
have been on tegretol for nearly twenty years and I don't
have many problems with it at all. My epilepsy is 98 percent
controlled, sometimes I have minor szs but every one with
epilepsy will know that it is unlikely to be controlled
completely, maybe I'm wrong but that is my experience with
tegretol.
Regards
Adrien
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-----Original Message-----
From: epilepsy@yahoogroup
[mailto:epilepsy@yahoogroup
cristinfilipuzzi7
Sent: 26 November 2009 18:42
To: epilepsy@yahoogroup
Subject: [epilepsy] I am new. Please can I have some advice.
Hello everyone. My daugter was recently diagnosed with
having epilepsy. My daughter is turing 12 next month. In
January 2009, my daughter had a seizure for the first time,
shortly after falling asleep. Luckily I was right beside
her. It was very scary. Her face turned blue, purple along
with her whole body shaking, foam at her mouth. She actually
stopped breathing for a short time. And I could not feel a
pulse. Shortly afterwards she was struggling to breath
again. She makes this choking sound at the beggining as
well. When the paramedics arrived her seizure was still not
ended. They gave her an injection of medication and provided
the air mask. Afterwards when she opens her eyes and looks
around a bit, she cannot talk. When she is finally able to
talk she starts screaming and crying. Then she is vomiting
for hours, shaky, and lightheaded, sleeping alot.
The folling day she had another one in the hospital.
She was admitted for 2 days. And we had followups with the
childrens nurologist. Her EEG shows that she has an
abnormality in the left hemishpere of her brain which is
triggering seizure activity. Mostly in the 2nd stage of
sleep.
She was not put on any medications. The doctor said that he
wanted to wait and see if she would have anymore. Last
Sunday at approx. 11:30pm it happened again. She had another
one. Luckily I was right beside her again. We had a bad
experience in the hospital, and she was sent home after
waiting 10 hours with the paramedics beside her to see a
doctor. A couple of hours later, she had another one.
She had an MRI done. Which came back ok. The doctor wants to
put her on Tegretol. He says that it is about 80% effective.
There are many side effects. And I am very worried about
this. I am really scared to give her this medication. The
majority of medications cause so many other problems in your
body. Does anyone know of any information that may help me.
I really apprecieate it. Thankyou so much.
Cristin Filipuzzi
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