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Cesbrown

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Hi everyone,
I am new to this forum and I need some help. My son was just diagnosed with epilepsy. He is a senior in high school. He is in major denial! He doesn't believe the doctors. His dream was to join the army when he graduated...now that is not possible! The took his license away...now he can't drive! According to him, his life is over! I just found out that he is pretending to take his Meds but is actually spitting them out! I have sat him down and talked about all the things he can still do, I've found research to show him, contacted the epilepsy foundation and had them send literature (which he promptly threw in the trash).
Any suggestions?
 
All I can suggest is a bit of hard truth - let him see a few youtube videos of seizures, and let him read about status ans SUDEP. Maybe he will realize how serious it is and, denial is not going to help save his life.

As hard as it is, treating epilepsy is better than risking the alternatives.
 
Hi cesbrown, welcome to CWE!

It's hard enough to be a teenager, let alone one with a new epilepsy diagnosis and no driver's license. It's gonna take some getting used to. His attitude change will happen eventually, but before that happens he really has to learn to take his meds. Not taking them, or taking them inconsistently, can potentially make his seizures worse.

Does he have problems with side effects, or is it just the concept of epilepsy that is making him avoid his meds? if it's the former, there may be other meds he can try. (Especially if he's on Keppra, which is notorious for causing crankiness and other mood problems).

His life is not over. Plenty of CWE members continue to live productive, fulfilled lives. They don't let themselves be "victims" of epilepsy. I hope your son chooses not to be a victim either.

Best,
Nakamova
 
As Nakamova said - He has to learn to take his meds. If he doesn't take them to help control the seizures then he could end up dying. If the meds have side effects that are to much for him to deal with then he needs to be put on another med. It took a good many tries with different meds before we found ones that the side effects weren't too much to take.

What type of seizures does he have? If he blacks out during them then he probably doesn't know that he's had one. I usually black out during my seizures and if there is no one there to see me have it then I don't know that I've had one. My husband actually video taped me one time while I was having one because I wanted to see what I was like during the seizure. I don't know if maybe you could try that with him to prove to him that he is having seizures.

I had my first seizure and was diagnosed with epilepsy I was 25. I had a great job and was living on my own but then I had to quit my job, stop driving and move back home with my parents. The guy I was dating at that time lived about an hour away and I'd only get to see him on the weekends if he came and got me or if my parents drove me to his place, the relationship didn't last very long after that.

All of my friends live around 45 minutes away and I live in the country, with no public transportation. It's hard for us to get together, we talk on the phone but don't get to have much 'girl time' to do things.

Do you think you could try to get him to join this web site maybe? If he see's there are other people going through the same things that he is - not being able to drive, having to stop working (like me) and have to rely on other people for allot of things or unable to have the job that they've always dreamed they would have - then he knows he not alone in this. He can even find out how other people get over these issues and realize that he can have a normal life to live.
 
He is on Keppra 500mg twice a day. I called the doctor and we are going back in on Tuesday to see about changing meds. He never had a seizure before. About 3 weeks ago he dropped at school...witnesses said as he was coming out of it, he went back into another. He hasn't had one since (that anyone has witnessed). They did a sleep deprived EEG and said he had a 3hz episode. Not even sure what that means as far as severity. They didn't tell us a type...only he has epilepsy.
 
So this is all really new? I'm so sorry, it must be hard for you to take in as well. I hope you feel free to ask questions as they arise. Information is your friend -- the more you know and understand about epilepsy, the better you can cope.

I hope the doctor can help your son find a treatment he can put up with. And maybe give him a better sense of what to expect over time. Sometimes a seizure really is a one-off. Not every EEG is conclusive. It's worth finding out if there would be a possibility of tapering off meds in the future.

Do you have any clues as to what brought on the seizure? Sometimes it isn't obvious. In my case, I had never had any health issues before, and would have said that I was perfectly healthy. But I was under tremendous stress, I wasn't sleeping or eating well, and the only thing I had consumed on the day of my initial seizures was several cans of diet soda. Was your son feeling fine in the days and hours leading up to the seizure, or were there any contributing factors to consider?
 
I can understand how he feels all too well. I had a time where I was driven to bed all the time due to fear. I would try to explain to him or find someone close to where you live around his age that has a simalar issue. You are his mother and as hard as it may sound, coming from you it may not have the same impact as someone who is closer to his age.
 
He sounds like me a little bit. I was at the complete denial stage about a year ago, but I've come to terms with it a lot more (not completely) in the last few months.

I agree that it's all about information and education. The more he learns about it, the more he'll come to grips with it. Could you maybe speak to the school and see what they're doing to raise awareness (It's E awareness month in the States next month right?). They could have an assembly about it, possibly send letters to the parents so that they could understand it better. Chances are the parents know very little about it.
 
Hi there, just to echo what Nakamova said, teenagers and epilepsy is a tough mix. My daughter (she's 16) takes her meds (I think!) but is irresponsible in other areas such as avoiding her major seizure trigger - sleep derivation - and eating healthily. Your son (and yoU) have had a major shock, especially since his E diagnosis has cost him his licence and the career he wanted to pursue. Give him time, and all the support you can x
 
Thank you for all the comments. I hope the doctor will give us some new Meds. I also hope my son doesn't punch him in the nose! I have tried to find a local support group but no luck! I have talked to his counselor at school but that isn't helping much. We will just keep on trying things and pray he accepts it soon!
 
Each med will affect every person differently, the best suggestion I have for meds is to be patient, and take careful note of side effects. Also try to give it time for the side effects to work their way out.

I was on Tegratol for about 3 months and it sucked for me. I've switched back to Lamictal, and there are very few side effects (for me) so it's the one I am comfortable with. However, I had a seizure on Wednesday, so something might change.

And don't forget that, the doctor works for you and your son. You're allowed to question him, to bring a list of questions, and you're also allowed to get a 2nd, 3rd or 4th opinion before you decide on a diagnosis and treatment plan.

((hugs)) to your son and to you!
 
Thinking about it, I'm a little surprised your son has been put on meds after only one seizure. We played a waiting game with our daughter even after two, which bought her four years before she had to resort to the meds route.
 
About four years ago he went through a 2 month period of randomly passing out( a out 15 times over that period). I think they bus e it was a precursor to the back to back seizure. Plus they saw activity on the eeg
 
Perhaps they were linking it to his previous problems then. Did he have an EEG back then? My son had passing out problems for a while (not as frequently as yours) but his EEG was clear. My daughter was diagnosed via EEG after her first seizure but they were still in no hurry to put her on meds. Different doctors take different approaches, I suppose.
 
No EEG in the past...I wish they were a bit slower to diagnose his. He has t had a seizure since. How do we know if he will ever have one again? I know he is not taking Meds and still isn't seizing. How do I know diagnosis is correct? We only have 3 neuros within a 250 mile radius and they are all in the same practice and won't cross over patients
 
It's really tough. We thought our daughter's seizures were perhaps gone (despite a diagnosis of epilepsy) when she didn't have any for four years - and then they reappeared out of the blue, and they seem to have stuck around this time. I can't give you medical advice, obviously, and I don't know your neurologist's reasons for putting your son on meds but maybe it would be worth explaining to him/her that your son hasn't had a seizure despite not taking his meds and asking if it might be worth leaving the meds for now and seeing what happens? Of course, there are risks attached to that - he could have a seizure an injure himself in some way, so it's not an easy decision. You would also need to discuss it with your son, providing he is willing to do so. I had just read so many bad things about medication side-effects that I didn't want my daughter taking them unless it was absolutely necessary, as has become the case.

As Nakamova says further up, though, plenty of people who have epilepsy live life to the full and I'm sure your son will realise this once he gets over the shock. My daughter sang at a school concert on Thursday night, went to a party last night, did four hours at her part-time job today and then went to a gig a hour away tonight - all normal teenage stuff. It's such a shame abut your son's driving licence (Rosie isn't old enough to have had one in the first place, so it's not so hard on her) but better safe than sorry, and he may have it back before too long if things go well. I know how worrying this all is for you and your son but you WILL get through it.
 
Well, my friend was all but seizure free, just one or two absences a year, which could have been for other reason, for 15+ years, off meds and all then the 17th of this month, status for 7 hours, non stop t/c alternating with absence seizures. So it can happen.
 
Does he take brand name medication? Personally, I feel strongly in favor of brand name or consistently taking the exact same manufacturer's medication on a regular basis.
Also, is he consuming those energy drinks to compensate for side effects of medications? They have had a bad rap in the news lately for normal kids.
Personally, I had more help career wise from a school nurse than the guidance counselor who frustrated me completely. There are programs that may help him build a career. He's probably thinking he has no future, no dream, etc. Does he have interests in other areas?
 
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