Hi Rachel,

 

My names Sue, I live in Yakima and have an 11 year old daughter with epilepsy.  She's had seizures since she was 10 months old.  Today, she's in mainstream classes with speech class 2 x's per week, pulls in straight B's except for reading, and is a happy healthy little ornery girl....except for that a couple of times a year she has a cluster of grand mal seizures.  No one knows what it's like to have a child with seizures, until they've experienced it first hand.  I'm just swamped right now with life in general, but I'll share more later.

 

Take care, hang in there, and talk with you soon.

Sue

 

In a message dated 1/30/2006 12:24:24 P.M. Pacific Standard Time, rachelhay2005@... writes:

Hey Trina, Trevor takes Pheyntek twice a day now. He has partial seisures where he goesa blank for 3 - 4 minutes at a time. He never remembers things afterward. When Im with them i sit by him and talk even though im not sure if he can hear me and i hold him or rub his back. Sometimes people say stupid things like "At least its not something really bad like cancer or something,there just seisures". JUST seisures....By watching trevor I dont wish them onto anybody. I guess I should understand that others do have worse illnesses but I get so angry about them .How can people expect you not panic when you are losing minutes without knowing what could happen? Maybe they dont know what else to say? I wish they wouldnt say anything sometimes. Thanks for listening,keep in touch.Rachel

Trina & Philip Knighten <knightenpt@...> wrote:

Hi Rachel, thanks for responding. I was on Tegretol for about 7 years without any problems and then last year I had another seizure and was at the limit for Tegretol so we had to add what they call an add-on drug and that is Keppra. It was working just great until January 15th so I had to up the dose. How old is your son? That has got to be so scary, I wouldn't wish these things on my worst enemy. But the one thing that is so hard is to hear people say, "you're going to have them so you just have to deal with that and learn how to not panic." So that's why I'm trying to reach out to others who know what I feel because no one in my family has ever had one so no one truly understands. To answer your question I started out having grand-mal seizures but I actually haven't had one for years, the ones I'm having now I don't completly lose consciousness. Thanks again Rachel, hope to hear from you again.

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From: Rachel Hay <rachelhay2005@...>
Reply-To: Cent_Wa_Epilepsy_Support@yahoogroups.com
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: Re: [Cent_Wa_Epilepsy_Support] living with epilepsy
Date: Sat, 28 Jan 2006 10:40:53 -0800 (PST)

Hello, I got your email and wanted to right back. I personally do not have epilepsy,my son does. On the other hand of that I try to talk to people about what its like for me and they are great but cannot understand as Trevors mom the panic and fear i have.We have only been dealing with this for the past year and a half so Im still learning about it and dealing with the frustration for my son that wants to be "Normal".

I watch him and i try to stay calm so he doesnt panic like you say you feel although Im sure its so scarey that its natural to feel that way. What kind of medication do you take if you dont mind me asking and what kind of seisures do you have?

I personally cannot understand what it is like for you - but if you need a sounding board, I am willing to listen. Rachel

tknightenmom <knightenpt@...> wrote:

Hello to all, this is my first time on a message board but I am
deperatly seeking others living with epilepsy. I have a great support
system in my family but know one understands because they have never
had seizures. I have had epilepsy for 10 years and haven't had that
many but I have had two in the last year, my last one being January
15th. These things scare the crap out of me and I panic alot after I
have one. I just need some other people who know what I'm talking
about to talk to.

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