Hi Christin,
Welcome to our group. I'm sure watching your daughter was scary. I have had EP for 47 years
but have never seen a sz except on TV. I know that is not the same as seeing your daughter. My
3 daughters who were 2, 4 and 6 when I was diagnosed (DX) and my husband (now ex)are the
ones who saw mine. I was out.
I have never taken Tregretol but most of us have found that each person has to find the med or
meds that works for them. That one may work for her or another needs to be added or you
try another. I have been on Dilantin and Phenabarb for over 20 years. But others have to
change sometimes. There are 25 different szs and about that many meds. So you are entering
into a different part of your life.
I consider this group one of my families and I hope you will also.
Millie
----- Original Message -----
From: cristinfilipuzzi7
To: epilepsy@yahoogroup
Sent: Thursday, November 26, 2009 12:41 PM
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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