Need help with son seizures

Hi MOM,

Most people here call me "GG" (GodivaGirl). I'm now 35, was diagnosed when I was 5, went off meds at age 12 when doctors thought I'd outgrown things, and after some sort of cold/virus thing had a more severe seizure & went right back on meds at age 16. I've been on them ever since.

If I had to guess, you're probably the one that worries way more than anyone in your family, and being cautious with your son, being a bit protective of him. The reason I say that is it's my mom that's always worrying way too much about me. My dad worries at times, but is more "take things as they come" like me.

It's just been recently that I realized that it's a tough balance - leading a normal life, and following doctors orders. I was in an 8 yr relationship with someone who put themselves first, to the point where I couldn't afford my medicine at all, so I walked out on him. And well, now I've got my mom who worries about me, my dad that's there when I need him to be, and I'm in a fairly new relationship with a guy who's always buggin' me about doctors orders. It's a tough but "normal" is what people want.

Of course you need to worry, and you need to follow doctors orders. At the same time though, don't over worry. Try to let your son lead the life that he wants. Seizures can't stand in the way too much. I've been on different mixtures of meds. Right now I'm on Topomax, Keppra & Clobazam. I'm actually looking into neurosurgery with doctors in London, Ontario. I'm just tired of all the medicine combinations, and my doctor in Toronto says it's the best option left. Keep in mind, I'm not new to this, so for me that's right.

Thing is, growning up. I've never let seizures stand in my way in life. I was a total sports kid - baseball, ringette, hockey, skiing, tennis. Even now, I wanted to go snowboarding this winter. It's my boyfriend that thinks I'm nuts! Now that it's nice outside, he's making fun of me for wanting us to go rollerblading.

Education wise, I finished off highschool, and after that I went to university for sociology & criminology. I was going to go to law school, but as I was studying for my LSATs I ended up with a great job in technology. The economy sucks & a few years ago the one company I worked for downsized me since I couldn't always be onsite. I don't mind. I have a lower stress job, but actually work in Microsoft Pre-Sales.

I've also had my own appartment in life, was practically engaged (like I said, it was my choice to walk out on my ex), and now I'm in a relationship with a great guy.

My key thing. Friends, family and my boyfriend all acknowledge that I have doctors orders to follow - keep stress minimum, keep caffeine low, take meds as directed, etc., but other than that really epilepsy gets glossed over. People know what to do if something happens. When I'm taking extra meds because of triggers, my boyfriend calls me zombie girl. He's good at reminding me to take my "7's", my "12's" and my "10's" (time of day to take 'em). Friends and family are accepting of things, but for the most part I'm just "me" and it's blended into my identity.

Your son is going to have some parts in life that may become tough to deal with if he doesn't out grow seizures. Having family & close friends accept him for him, will help lots. 16 is when he's going to want a driver's license & for safety, when you're going to want to think that through. That was the toughest for me, and tough for many people here. It will hit him hard. Just tell him medically, it has to be that way, but work with not against doctors orders & try to do something to make it easier.

It's also tough when friends get into things you want, that medically can't happen. Parents don't see them as right, but they happen. You're in for a tough juggling act of treating your son normal, and reminding him there are doctors orders to follow. It's all about just not giving up that the "normal life" you once knew before a diagnosis can still happen, but then since your son is 16 - "normal" things might not be approved by doctors. ie. driving, certain sports, etc.

Good Luck!

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Re: Need help with son seizures

When I started having seizures when I was 12, the epilepsy didn't bother me so much, it was having to deal with classmates who were not very understanding (to say the least). But with seizures then under control I bounced back and lived a normal teenage life (if there is such a thing).

Your support, understanding, and love is what he needs (and an occasional hug if he'll let you). Don't worry it'll work out.

By Brian3D on Wed, 03/24/2010 - 3:44pm

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I was told at 15 i had JME, It turned out that it didnt bother me at the start, but then teachers in school and some others not knowing correct information would 'mother' me and id feel crowed...happened with everyone but the best advice is not to change to much to fast in how you treat you son, he'll start to notice it and feel 'differant'

Good luck x

By bonnie... on Wed, 03/24/2010 - 4:18pm

My son at the age of 15 developed seizures after being diagnosed with AML Leukimia had a slight stroke and ended up with them. Thank God he is in remission from the AML but we are struggleing to control his seizures. It is very stressful trust me I know. My sone is 18 now and was having them every 6 months but now they are getting closer. He has been on every medication u can name. Crazy but he does know when he is gonna have one. He gets an ora. see's a flashing light about 5 min before he has one. That makes it a little better to prepare. But it is sad to see them go through that and he guareded there hole life. My son is upset he can't drive yet, but is also I think scared as well. I hope you find a good doctor were ever you r. Iv'e been through a dozen and still haven't found the right one. Good Luck.

By Rosalie on Tue, 03/23/2010 - 3:40pm

By Godiva... on Sun, 03/21/2010 - 5:15pm

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Need help with son seizures

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