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 week. 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.
 
bobby123

Its ok to vent, it helps a bit at times. The thing with the medications is it is trial and error until you find one that suits. You need to start keeping a diary for your son, time he gets his seizure, for how long things like that. The times he takes his meds, if you see something you think might be effecting him you make a note of it and in this way it helps you find triggers that can bring on his seizures. This is never going to be an easy road and you are going to get down. No matter what medication he is on always look at the side effects listed and watch out for any of them. Keppra works for some, I am not one, there is a thing called keppra rage which is a side effect you might want to look it up.
 
Thanks for the response and I know I double posted. I know all about the side effects and the rage certainly bothered me as he isn't the easiest going kid. That said the cotton wooling from me would affect anyone.

We keep a diary but its all so random at the mo. Is the dose of keppra low? He's approx 140llb a thinnish lad but eats for two (bit jealous of that tbh).
 
bobby123

Double posted, not to worry. The cotton wool has to come off, he is 15 and let him get on with things, just because he has epilepsy he still has a life and all you can do is watch out for him and look after him - I am not saying this is easy. All medications you have to start of small makes no difference your age, weight has a bit to do with it and do not forget ever body is different so the way they are absorbed is different. Things start off slow.
 
bobby123, warm welcome to CWE

My Son was diagnosed end of 2009, he is 28. Like your Son he suffers from T/C, though not strictly.

When u say you wrap him up in cotton, I so get it…. was just the same (still am) BUT had to learn to let go and let God, because if I did not the worry would have honestly put me in an early grave…

So I want to say this to you, take good care of you too….do not let the worry/fear get the better of you. If a seizure happens, it’s most important that those with/around him know how to respond.

So education and teaching the family/his friends and yes school how to manage if a seizure occurs may give some piece of mind.

My Son wears a cool medical alert necklace, confirming he has E and his meds and emergency contact number. Never leaves house without it.

Diagnosed in 1st year of college my Son has made it to his final year and will graduate sometime next year (we don’t care how long it takes and r so proud he stuck with it) and he is out there living his life.

Your Son may or may not need additional help at school, we felt it important to tell school and we were so glad he did, he got 5 years to complete a normal 4 year study with extended grants and there is clear understanding that he is living with Epilepsy so if he can’t make it for an exam, there is leeway

My Son is in neurotherapy/bio-feedback (brain training), maybe you could do some research or any questions please ask…plus he sees a therapist who really helps him deal with ALL that comes along with E (frustration at not being free to just be and your son is so young), sure my Son can talk to us but with a therapist he can let it all out..

Keep the spirits high and educate, read and learn all you can. We here for you, and here at CWE we learn from each other….so that means we will learn from you sharing your journey to
 
Hi and welcome,

You have a right to feel the way you do, don't be hard on yourself. It has to be hard for a parent to be told their child (no matter their age) has a conic condition.

I'm the one with E. and I want to let you and your son know their is life after being told you Have E.

has your son started keeping notes of seizures, times and length, triggers, sleep pattern, diet --- EVERYTHING

I have said this so many times to new members, But I have to say it again-- I have learned so much on this forum ( at age 60) that it has changed my life.
 
Thanks for all your responses. I'm talking to the school regards the exams etc and keep a diary.

We have another appt tomorrow with the specialists so we'll see what they say.
 
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