Stressed mum of son who has epilepsy

[SandyL]

Hi, my son is nearly 15 and has been diagnosed with epilepsy for 5 years. He has partial seizures and absences which at the moment are not controlled.
He also has seizures after exercise which apparently is rare and a cardiologist is looking into this.
My son is very excepting of his condition, sadly I am not. I am in denial and think he will grow out of it. Which I have been told is unlikely.
It would be good to feel I'm not the only one out there that feels like this and that I'm not going mad.

[epileric]

Good to have you here. There's a lot of parents here whose kids have epilepsy so you're in good company.

I"m surprised you'd be told that having seizures after exercise is rare, one of the main triggers of seizures is hyperventilation. I remember in high school my mom kept telling me not to overexert myself when running the track. I do occasionally have a seizure when working out (when I did work out) but the more I worked out the less hyperventilating effected my seizures & the better shape I was in the less seizures I had.

Meanwhile look around & please feel free to ask questions if there's anything you want to know.

[Crazy Monkey]

Hiya Sandy

Welcome to CWE

Trust me, you are not going mad...It sounds to me like you are not giving yourself enough credit, it is great that you have sort out a forum that offers information and support, it shows to me that you are finding ways to try and deal with your situation.

I am at the other end of the spectrum, I am the one having the seizures, even tho I am on meds I still have on average 50 absences a day, my parents were truly in denial, I doubt the word epilepsy has ever passed through there lips (I was diagnosed 21 years ago), and they most definitely never tried to seek support and education in which to help us all.

As Eric said we have a lot of parents of children with E on this site, I am sure they will share their experiences with you.

Take care

[jaysmom]

welcome to the forum....i know you will find lots of information on here that will be helpful and meet lots of people on here that you can relate too.
my son was diagnosed 3 years ago and is fine with it as well. i worry more than he does. he said he actually doesnt mind having seizures....go figure ! he has simple partial, complex partial and drop attacks. i have been asked to keep a seizure diary 3 years ago and havent to this day. i keep telling myself that each seizure will be his last so it isnt needed. ummm, yeah.....still having them. just the other day i decided to finally "accept" it and start documenting things. it isnt easy to swallow it, i agree. the faster we do though, the easier it gets. we talk about it alot and i think that it may be the reason he accepted it so well.
please poke around the site and see that you arent alone. we are all here for the same reason....support, a little more knowledge, to meet people in the same situations.
good luck and hope i can help
chrissy
aka, jaysmom

[Ruth]

Hi Sandy, welcome to CWE. You will get a lot of support and caring here. We all understand the different emotions we all go through.

My epilepsy is genetic. My father and sister had it. I am 66, so I have not outgrown mine. My father and sister outgrew there's though. I do not know if they continued taking medicine or not. My sister worked at a good paying job and earned money. There are famous people that have epilepsy.

It is possible that your son will outgrow it. I am not trying to get your hopes up. I did not outgrow mine. Mine just got worse over the years. It is good that your son accepts his epilepsy. You are not going "mad." You just want the best for your son.

As for sports, it depends on how much he has to do. Like football, I would not recommend. That can cause seizures when they all jump on each other. I use to ride horses at that age and take long walks. They relax me. I know another epileptic that plays tennis, goes hiking, writes songs and poems. Those are are restful and relaxing.

My parents were disappointed when I did not outgrow mine. They were thrilled when I had a boyfriend who was willing to accept epilepsy and marry me. We got married in 1963 and we are still married. He takes care of me when I need help.

[Bernard]

Hi Sandy, belated welcome to the forum.

You are definitely not the only one struggling to find acceptance with epilepsy.

You might find this study interesting: exercise and seizure activity

[RobinN]

Hi Sandy - my daughter was 14 when she had her first seizure. She is now 17 and if accepting it means to stop looking for the cause of it, then I am certainly not accepting it.
I continue to look for the reasons, because she was fine for 14 yrs. I am narrowing it down, and my daughter is med free and is gaining control over her seizures. We are raising the threshold each month.

[andy]

hi sandy , personally i think if you exercise it keeps your body and mind in a far stronger condition than if you do nowt at all.

[Ruth]

Hi Andy, welcome to our forum. We are a friendly bunch of people.

You are right Andy, exercise is good for us. When I exercise, I am in better shape mentally and physically. When you are exercising, you are not thinking about your epilepsy.

[andy]

Hi Andy, welcome to our forum. We are a friendly bunch of people.

You are right Andy, exercise is good for us. When I exercise, I am in better shape mentally and physically. When you are exercising, you are not thinking about your epilepsy.

Its not a case of not thinking about it , i find that i have less auras/ episodes when im doing regular exercise , which is only jogging 3_4 times a week .

[Ruth]

Andy,

That is great, you are having fewer seizures during jogging. That is the way for you.

[andy]

I remember a documentary on TV a few years ago about a Welsh lad about 18 years old who was a champion at his weight for weight lifting . He had regular seizures which obviously couldnt stop but if he had one during a competition he could delay it by concentrating on his next lift.
He would then do the lift then go to his dressing room or were ever and then let the seizure run its course .
He said he,d only being able to do this since he,d taken up weight lifting and improved his all round fitness.

[epileric]

I remember when I worked out my seizures were less frequent & less severe but what surprised me was how my concentration & memory improved. Seems like there's probably a connection.

[Ruth]

When I work out and go for walks. I was able to go for 4 mile walks and hiking. I have to build up myself again. When I had my pneumonia, it ruined my exercize. I had the same thing happen to me epileric. There is a connection.

[katie's mom]

Has your son's doctor said he might be a candidate for a diet-based treatment if the meds are not working? I understand the struggle to fight for the best quality of life for your kid. My daughter has a serious form of epilepsy and was declared intractable/med-resistant. Since starting the Ketogenic Diet, she has been getting better & better every day. The Ketogenic Diet is very difficult, but there are also some other less restrictive diet options. Ultimately, it's a quality of life call. If you think your son's seizures are limiting his day-to-day routine, it may be worth considering.

[RobinN]

I must say that making nutritional changes with my daughter has made the biggest improvement in her seizure patter. Neurofeedback has only helped to inhance and support the better nutrition.

[Ruth]

I have become a strong believer in nutrition. I am slowly changing my eating habits and I am starting to get fewer seizures. It also helps me control my diabetes, cholesterol and triglycerides. The last time I saw my doctor, she told me that my cholesterol and triglycerides had dropped dramactically.

I told her I was slowly changing my eating habits and she told me to continue doing it.

[Kayleesmom]

Hi Sandy,
I am also a parent. My 3 year old daughter has been having grand mals since she was 5 months old. I really believe that even at 3, she deals with it better than I do sometimes. We all wish the seizures would just go away. Sometimes they do. Sometimes they don't. Your definitely not going mad (but I know how you feel). We'll be praying for you and your son.

[paradise survivor]

Aloha Sandy! I am the only one in my family to have seizures. It hit me at age 37, got to admit I did not see that train commin! My parents think my husband 'gave' it to me...such a shame! HE IS MY GREATEST SUPPORTER!! Don't get me wrong, Denial IS my first name. I always think my last one is the last one. However my hubby whom I adore has made me get up and go on, it is frustrating when it disturbs an event or special occassion, or even a dinner out but we go anyway. Life happens. As for excersise, well, hubby doesn't 'love' when I go for long walks (though I do ) so he got me a WII Fit. The first time I tried the balence games, the stupid machine asked if I "trip alot"...the nerve!! (who is in there anyway?). upright is best when possible, soft landings are best if not

[Ruth]

Hi Kayleesmom,

Glad to meet you. You will like it here. Every one are a friendly bunch of people. You will make a lot of friends here.

That is tough, having your daughter start at 5 months old. Children do take it better than parents. I took it better than my parents. My seizures started at 6 years old.