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My sister has epilepsy.

Tue, 04/04/2006 - 20:19
i guess i'll start first with my story... im 21 and my 17 year old sister had her first seizure (grand mal) this past christmas. we were all sitting around opening presents and all the sudden, she threw herself forward and started making a deep guteral noise. i thought at first that she was choking, but quickly realized it was a seizure. she had never had one before so we were all very frightened. an ambulance took her to the hospital where they ran just about every test imaginable. they started her on dilatin (through an iv)and her blood pressure began to drop dramatically. when this happened they decided to admit her and watch her overnight. her blood pressure went up a little bit the next day, but not as high as they would have liked it to. they decided to release her anyways and gave her dilatin to take at home. two days later we met with a nuerologist and he explained to us that everyone is "allowed" one seizure in their life. he also told us that typically if someone has epilepsy they will have their second seizure within 3 months. he would do an eeg and if the results came back normal, she would be slowly taken off of the dilatin. eeg came back normal, so we weened her off the meds. march 25th came around and we were sooooo happy. she had been seizure free for 3 months!! two days later, i get a call from my mom saying that courtney had just had a seizure at school (grand mal again) and that she was on the way to the hospital. i honestly could not believe it. technically... this was the 90th day exactly! this time, she hurt herself too. she feel into her neighbors desk very hard and ended up with a black eye. they started her on the dilantin again and this time she had a very strong reaction to it. the doctors were not in the room right at the moment we noticed her acting funny, but she looked like she was stretching (but not in a normal way) and she started talking and not making any sense at all and then she began throwing up as her blood pressure was dropping!! i have no idea if that is a seizure? anyways they stopped the dilantin immediatly and admitted her to the hospital again keeping her over night. she met with the nuerologist again today and he is starting her on another medication (something with an L) because he said that dilantin can have extreme side effects and he doesnt like how she was responding to it. i decided to join this site because i really feel like i need to talk to people about this and my family just isnt cutting it. i tend to over dramatize things, so i am honestly freaking out about this. as i am writing this, im fighting off tears because i am so concerned for whats to come with her. i feel so sad that my little sister has this happening to her. she does have a learning disorder and did have a traumatic birth which i have read is very common with people with epilepsy. she was supposed to get her license this july but the doctor said she cant for at least another 6 months. i think and worry about her all day and even make her sleep in my bed with me because i want to be with her if it happens again. whenever she's in another room, i call out to her every once in a while to make sure she is coherent. my parents arent even taking this as bad as i am. i guess what im hoping to gain from this site is some people to ease my fears. sorry this was sooo long. i just have a lot on my mind.

Comments

Dear Brittney, Just wanted

Submitted by rootbeergirl16 on Fri, 2006-04-07 - 13:22
Dear Brittney, Just wanted to answere your question Charlie is on medication (Lamictal) a very low dose and we are uping it very slowly then side effects are a little strong but they seem to level out after about a week or so. We are not really sure if the meds are working or not Charlie has only had 5 Sz her whole life and they have been really spread apart her last one was in June of 2005. We are certainly hoping that no more will occure we can only watch and wait and of couse worry. I know for my daughter that stress and lack of proper rest greatly contribute to the Sz that she has had. I am hoping that you are finding the info and support that you are looking for here as I believe I said before there are so many wise and helpful people here and they have been a great help and comfort. Best wishes to you and if I can help in any way please let me know. Always Pam

Re: Dear Brittney, Just wanted

Submitted by brittykity143 on Wed, 2006-04-12 - 14:16
Pam, Courtney is also taking Lamictal. They gave her Dilantin in the hospital, but she was having strong reactions to it so they decided to slowly start her on the Lamictal. They kept her on the Dilantin in the mean time and she is slowly being taken off of it. She actually came home early from school today because she said she was having trouble seeing which has happened shortly before her last two szs :/ This sit is helping me soo much. It's nice to be able to ask normal people questions and not just doctors. Thanks for your help!! 33 Britt

Re: Re: Dear Brittney, Just wanted

Submitted by rootbeergirl16 on Wed, 2006-04-12 - 18:15
dear Brittany, I am so glad you are finding this site helpful I know I have learned alot here and found so many wonderful people that have helped with storys and advice. If I can be of anymore help please let me know Pam

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