<<<<Cristin>
First off welcome to the group. I am Sharon, Mom to Mindy who is 17 and
currently has Petit Mals, had her 1st grand mal this past Feb. As a Toddler
(age 3-5) she had Atonic (drop attack) seizures. Had migraines after seizure
was done. At that time ws on Tegretol and dilantin - never any side effects.
. when she grew out of that seizure - all meds were dropped.
She ws on Keppra but was suicidal and taken off that and put on Topamax and
still on that now.
Each person is different - so what one persons reaction to a med was another
wont neccesarily have the same effects.... Know what I mean?!
Ask away..... If ur daughter would like to talk with mine thru yahoo
messenger let me know.....
Sharon
(Uggie is what my online name is)
-------Original Message-----
From: Cristin Filipuzzi
Date: 11/26/2009 3:22:05 PM
To: epilepsy@yahoogroup
Subject: Re: [epilepsy] I am new. Please can I have some advice.
Hi Liz. Well that is wonderful that you are now seizure free. Do you mind
me asking how old you were when you were taking Tegretol and what side
effects you had?
Take Care.
Cristin
____________
From: Liz Welker <lizard110366@
To: epilepsy@yahoogroup
Sent: Thu, November 26, 2009 3:14:28 PM
Subject: Re: [epilepsy] I am new. Please can I have some advice.
((((((((Cristin) )))))))).
I am so sorry you and your daughter are going through this. Seizures are
scary, no matter what, especially if you see them. I can tell you that they
aren't nearly as scary to have, since we feel nothing at all, and her
behavior afterward is very likely strictly post-ictal, meaning automatic
after-seizure" response from her brain because of the areas affected. Limbic
(emotional center) impact is very common, and it's possible she has no idea
why she reacts the way she does and may not even remember any of it. I
experience panic for several seconds as my szs spread through the brain, but
I know better than to be scared of them. I had my first one as a baby and
know I'll be okay when it's over. I'm a 43 yo mom now and have had only
about 20 GM szs, but there have been simple partials in the thousands, which
also generally cluster and made me horribly sick until I started Keppra in
July. I have not had even a hint of a sz since--first time ever!! :)
I can say from personal experience that I don't blame you at all for your
fears about meds. AEDs are famous for annoying and even debilitating side
effects and adverse reactions, and Tegretol gave me my worst of them all,
but different people react differently to the various meds, and the more
info you have, the easier it will be to make the call as to whether or not a
switch or change in dosage is needed. Make your pharmacist your best friend.
Read, read, read on any and all info about whatever med you choose, and keep
your eyes peeled for any sudden physical, emotional, or neuro changes that
may occur. (It's generally par for the course to experience some, sometimes
significant, effects from a new med for about six weeks after it's begun,
but if they don't lessen over time, a talk with the doc is warranted.) It
took me until about 2 weeks ago to get a handle on the severe insomnia
problems I was having from Keppra, but it's getting much better now,
since I'm taking a lower dose and have added 5-HTP. All of this can take
awhile to navigate, but the more you know, the easier it can get. :)
GOOD LUCK, and please ask anything at anytime!
LIZ in RI, FINALLY COMPLETELY SZ FREE at 43!!!!!!!!!! ! :)
--- On Thu, 11/26/09, cristinfilipuzzi7 <cristinfilipuzzi7@ yahoo.ca> wrote:
From: cristinfilipuzzi7 <cristinfilipuzzi7@ yahoo.ca>
Subject: [epilepsy] I am new. Please can I have some advice.
To: epilepsy@yahoogroup s.com
Date: Thursday, November 26, 2009, 12:41 PM
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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