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New to the site - Mother of m/16
Sun, 01/02/2005 - 20:24Hello:
I just found this site today. What a great site and support. My son (now 16) had a grandmall seizure in July out of the blue. It happened at a very early (6:15 am) football practice. The coach was amazingly supportive then and during the last 5 months. We don't exactly know what had triggered it but he was going all out at sports camps and lifting. The day before he had slept until 3 pm.
This has been a very tough 5 month adjustment. School has been a struggle (he's on tegritol - because of cognitive effects). Sophmore year is tough anyhow with mainly honors classes. This fall he continued as part of the football team, (did cardio drills but didn't suit up) which was great socially. He was the stat guy and got a special award at the banquet. All the kids signed the football and they said how he was an inspiration to the team and taught them NO excuses. (As part of the testing - MRIs they found another issue so contact sports are out). He had to give up his passion hockey so is doing x-country skiing another tough adjustment. He is asst coach for the middle school which is great. His friends and classmaste have been good (largely about the other physical issue). School he has been going for extra help. School has been tough, but he has gotten support and worst grade was a C. He is also going for counseling (as I am). I'm so very proud of him. His sister also went away to college in August (a month and a few days after it happened). She is home now which is wonderful.
He is in the process of switching to Lamictal - Week 7 now and is up to 100/mg am and 150/mg pm, with the tegritol. He had a grand mal siezure in his sleep 7ish the day after Christmas. He didn't realize he had one other than a sore tongue. Was especially tough since he had not had any other than the initial. He did say he had a tough time getting to sleep up past midnight at least. I'm thinking it was more like 2 with a new game. I found the game boy on after the seizure. We go back to the Neurologist for a blood test this week. They think most likely he will be at 300-400 and then once there for awile taper off the tegritol.
I've been reading all your posts and trying to find out what else I should be doing for him. I am so proud of him and just want to do the BEST for him. In addition to showing and telling him how proud I am and how much I love him, getting him the best drs, getting him support at school, working with his coaches, supporting his volunteering as a coach (and going to all the games), helping him find new passions, tracking his meds, being his advocate with the drs, We also have our faith, which is huge. Is there anything you strongly suggest? I know at times I want to shelter him and have to fight that.
So glad to have found this site.
- Robyn
Comments
RE: New to the site - Mother of m/16
Submitted by cstrain on Sun, 2005-01-02 - 20:24
hi
epilepsy is such a diverse condition, everyone is different. i've never had to not play contact sports (not that i would anyways, lol), but i can understand what a dramatic change he has had (and your family) to deal with as a result of the epilepsy. it is very difficult.
a couple of things i just wanted to respond to. I have juvenile myclonic epliepsy which is affected by lack of sleep, flashing lights, nintendos, etc. i dont know what label your son has been given, nor do i want to label him myself, but it does sound like he needs his rest as well. one thing i have found that helps me TREMENDOUSLY, is taking melatonin. melatonin is the 'jet-lag' pill, but i have been taking it for almost a year, and my seizures have stopped and i am on half of the dosage i was on. if you are in the US, the brand name "twinlabs" is the best for me...i take one an hour before bed. there has been some studies on melatonin and seizures, i encourage you to take a look into this.
also, your son is at a critical age. i know you wish to protect him, but be wary of going to overboard. some things he will need to learn to do on his own, as he will most likely, be living with this condition all his life. encourage him to do other acitivities that are no-contact, and to play nintendo with the lights on, and definately not when he is at all tired. i would suggest getting rid of the game boy, you have to have it so close to your eyes to see it....a regualar nintendo may be better if he wont give it up.
i had limitations as a teen, but i had to come to terms with it. i couldn't go and party or else i would have a seizure, for example. it sounds as though you are doing a wonderful job, but prepare him for his adult life to the best of your ability. for example, you can monitor his meds, but maybe not give them to him directly - make him take them himself. it is a hard reality, but will make your son stronger in the end i have no doubt!
take care
cassandra
hi
epilepsy is such a diverse condition, everyone is different. i've never had to not play contact sports (not that i would anyways, lol), but i can understand what a dramatic change he has had (and your family) to deal with as a result of the epilepsy. it is very difficult.
a couple of things i just wanted to respond to. I have juvenile myclonic epliepsy which is affected by lack of sleep, flashing lights, nintendos, etc. i dont know what label your son has been given, nor do i want to label him myself, but it does sound like he needs his rest as well. one thing i have found that helps me TREMENDOUSLY, is taking melatonin. melatonin is the 'jet-lag' pill, but i have been taking it for almost a year, and my seizures have stopped and i am on half of the dosage i was on. if you are in the US, the brand name "twinlabs" is the best for me...i take one an hour before bed. there has been some studies on melatonin and seizures, i encourage you to take a look into this.
also, your son is at a critical age. i know you wish to protect him, but be wary of going to overboard. some things he will need to learn to do on his own, as he will most likely, be living with this condition all his life. encourage him to do other acitivities that are no-contact, and to play nintendo with the lights on, and definately not when he is at all tired. i would suggest getting rid of the game boy, you have to have it so close to your eyes to see it....a regualar nintendo may be better if he wont give it up.
i had limitations as a teen, but i had to come to terms with it. i couldn't go and party or else i would have a seizure, for example. it sounds as though you are doing a wonderful job, but prepare him for his adult life to the best of your ability. for example, you can monitor his meds, but maybe not give them to him directly - make him take them himself. it is a hard reality, but will make your son stronger in the end i have no doubt!
take care
cassandra
RE: New to the site - Mother of m/16
Submitted by WashkuhnR on Sun, 2005-01-02 - 19:07
Hi Robyn,This may sound funny, but sometimes a relative wants to be to protective. Sometimes I feel funny because my mothers questions me, are you having a seizure? And it makes me feel very self-concious. Make sure to let him replace contact sports with non-contact sports so that he doesn't feel to different. I would have like to play football but realize I couldn't so at different times I played baseball, basketball, was in wrestling, and I'm currently 49 and I like to golf. You will gradually find out what others likes and dislikes he has.I find it rewarding to use my strenghts to help others and you forget your own problems. I'm president of mentoring. I felt I had to do this because I fell everything went my way in life and I realize others aren't that lucky. I'm on the selection committee for habit for humanity, and the 3rd weekend in may I help with fishing-has-no-boundries, a group that takes other people fishing. Beside going on the boat they need people on shore to prepare meals, clean fish, dock boats, etc. Make sure he knows other people need him. If you go to church, suggest he usher because other people arn't as capable as he is. If you want to ever write me direct I'm at pobob@cheqnet.net.I'd like to know how he does.