It's not a straight road is it?

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bobby123

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Hi,

Out of the blue in September my son had his first ever seizure at 15. It was a tonic-clonic which I naively thought was an electric shock. This was followed by another a week later. It's been a bit of a rollercoaster with the drugs. He got rashes with carbamazepine and lamotrogine. While he was on these he was seizure free for two months.

Now he's on keppra (500mg morning and night). Unfortunately he's had two seizures in the last three weeks. I can't help being really down about it and look at him waiting for something to happen.

I know some of you guys have it much worse, so sorry for venting.
 
Hi,

I had my first seizure at 5 and have been having them frequently ever since. I have one every day, but luckily I'm blessed enough to only have very mild ones that occur usually just in the morning before I go to work. I'm sorry your son is starting to experience them. It's never a straight road, but I'm glad he's a least had some success going seizure free. I wish I could even go 1 week without one, but I have learned to just cope with what I have. I hope you have success with controlling his seizures, grand mals are always scary to experience first hand.
 
Please don feel bad about how you feel. This is your child.

There is life after you are told you have E.

I learned about keeping a diary on this forum noting seiz. the time and length they last, new meds. prec. or over the counter, sleep pattern, foods, and more.

Feel free to ask any and as many questions as you would like, so that you can help your child.
 
If you're struggling, go ahead and vent -- that's what we're here for! No need to apologize.

I hope they can find a medication which will give your son full seizure control. Since he's known to be medication-sensitive (based on his reaction to the carbamazepine and lamotrigine), insist that any future titration schedule be "low and slow" -- this means ramping up slowly in tiny increments, waiting for at least a few weeks at each level before increasing the dose.

You might also ask about him trying the "XR" (extended release) version of the medications. Those can sometimes be taken just once a day (easier for a teenager), and some folks find that side effects are less problematic as well.

Will you be seeing his neurologist soon to talk about alternatives?
 
Thanks for the responses..

We saw a different doc which was a shame as the last guy was pretty good and this one was a bit meh.

Short story is we have been increased to 750mg twice a day. They said they would stay with the same drug until we hit the max dose unless he gets the rage or a reaction. I did ask about XR but we're in the UK and the doc didn't have a clue what I was on about! Do you wonder if you know more than the docs somehow.

Until this all happened I didn't really appreciate the NHS. I feel for you guys who struggle for treatment or have to buy your own drugs.
 
I did ask about XR but we're in the UK and the doc didn't have a clue what I was on about! Do you wonder if you know more than the docs somehow.
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The extended-release version of keppra is probably not available in the UK. Still, you would expect him to at least have some sense of what it was, and what any other options might be.
 
NEVER feel bad for venting on here, ever girl. That's why we're here. To be a shoulder, to lean on a shoulder to vent, cry, laugh, inform... the whole works.
I agree with brydy, tonic clonic first out of the gate is awful. Your whole life flips and you're like WTF??? I also feel, no I KNOW, I wouldn't be the same person today had this not happened, and tho it's a daily struggle and you pull your hair out, it makes you stronger than one could ever be. Which infiltrates its way into every other area of your life - you're strong through everything now b/c its made you that way. I hate epilepsy but will say there's been a few times I've appreciated the 'me' that it's made me.
We all learn to be that person and your son will too. It takes time, family, some luck, and (and I can't stress this enough)... a good neuro. If you feel meh about who you have now throw 'em out and keep going until you're with someone that you literally would trust with your life. I realize that isn't easy in every country but it makes all the difference.
Vent anytime you want, and welcome to CWE!!!!!!!!
 
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