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I really need help
Thu, 03/29/2007 - 12:43Topic: Living With Epilepsy - Youth
Hi!
My 12 yr old started having seizures again. She has been seizure free for 2 months.She does not have a lot of gran mal seizures when she does have them, but this past Tuesday she had 2 with an hour, and 2 on Wednesday morning. She also had one gran mal today, and an absense one.
She has missed school both days. She is in the 5th grade. She struggles every day with school work. My husband and I started talking about homeschooling her, but I really can't afford to do this. Does anyone out there have any advice on this subject? Is there something out there that helps families like mine?
Thanks!
Comments
Re: I really need help
Submitted by Dena Zentz on Sun, 2007-04-08 - 18:17
Hi! I know how you feel. My daughter started having her seizures at the age of 6. It was a battle. What we tried was going to the school and having a confrence with teachers, etc. They thought she might benefit from Special Ed. I know this sounds horrible but really it is not. They were able to modify a few things so she was not as stressed out. Now days most schools have programs designed so that the other kids dont even know. Her work was modified so that she would have more time or less problems. Schools are not going to jump on this unless you push it, but believe me it is worth the push. Once in special ed the schools start to pay more attention to your child. I think that it is worth you checking into. It does not mean that they are not smart enough just that they might need a little extra understanding. I thank god I did this. My daughter is now in Jr High and is doing very well with her grades and has been taught alot of coping skills through special ed.
Re: I really need help
Submitted by Michtom on Mon, 2007-04-09 - 08:14
Just another thought re school. My daughter is 12 and has had seizures since the beginning of last year. So in her last two classes of school they have run a general health topic where they have looked at chronic health conditions - including epilepsy but also including asthma, severe allergic reactions, diabetes and ones that are normally less problematic but can be lifelong eg hayfever etc etc. The good part of this is that it demystifies what epilepsy is. Most importantly though they worked out the maths - that in any normal class over half the children would of at some time have an ongoing health issue - so having something like epilepsy isn't that unusual or 'weird'. So the course adds perspective as well as information. Just a thought.
Re: Re: OK. To tell you about me.
Submitted by GodivaGirl on Thu, 2007-04-05 - 19:16
No problem for the comments there, just a little insight from someone a bit older than your daughter who's been through all stages. I can remember thinking people hated me, not because I was epileptic since I never really had seizures at school. For me, it was more I was a sports kid so I got along with most of the boys - actually more of my friends were boys than girls growing up. Confusing, huh! As far as the not cleaning her room. That's just a kid being a kid. If she wasn't using seizures as an excuse it would be wouldn't you rather I did my homework than clean my room. Kids never do what parents want 'em to totally. That would make life to easy. Kinda like relationships with men & women - they never work as easy as they should, again...why make life so easy? HA! To address your concern though. FYI: I've been on Topomax a few years. Don't know what dose you're daughter is at with that med. Myself I take 100mg 2 x day. It is a pretty powerful med. For me, as I adjusted to it, I know I felt horrible. It was tough to eat much. That lead to dizziness, tiredness, and as it got later in the day memory and little things like attention to detail faded. Keppra (one of my other meds right now) causes wicked mood swings at times. Clobazam, my 3rd med I take at night, if I take it too late I feel like a zombie in the morning. Seizures are physically draining. I bounce back from those pretty quick, but not all people do. As far as any differences in the way your daughter is acting, that could be the side effects to the medication they have her on. Increasing Topomax by 25mg every 3 days seems fast, but that's just me - I have a neuro in Toronto that does everything really, really slow. When I went on Topomax I upped that by 25mg bi-weekly. Thing is I was going on that to replace an existing med. Every situation is different. In there, related to the medication I'd suggest take a look at the side effects, talk to your daughter about them, see if anything applies to her, then maybe book an appointment with her doctors and see if maybe it might be better to find away so she's not getting slammed with the side effects quite so hard, and it doesn't impact school as much. Also, as a mom you may not agree but to keep up my memory skills, along with attention to detail I do have a portable Nintendo & I do pick up puzzle games (Brain Academy, Sudoko DS, etc.) There are lots of video games that are puzzles. I find played for 20-30 min at a time they help, they're also something fun kinda trendy, and she'd have something else to fit in with those hidden friends. Just a thought, if it seems practical. My portable Nintendo is a way to kill time on the bus to employment school right now, but I used to play Lost in Blue on my lunch at work. ~ Erin