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Absence seizures, swimming, exercise, and independence

Sat, 04/29/2017 - 15:11
I'm wondering about, well, a lot since my 12-year-old was diagnosed with juvenile absence epilepsy a couple of days ago. But today, two items have been on my mind. First is swimming. The neurologist said he can absolutely swim, but always with an adult present (which we've always required anyway). My extra concern here is that I'm not sure it would be easy to tell if he was having an absence seizure while swimming. We've never observed one while he's physically active. Only while he was sitting and engaged in a conversation, like during dinner or going over homework with us. In truth, we've observed very few absence seizures over the past maybe 3-4 months (only recently did it even strike us as an issue, as we first thought he was distracted). Of course, we know there might have been episodes we haven't seen. The fact is, if he had one and we weren't talking with him, it would be darned hard to notice anything at all. And that's what worries me. If he's swimming underwater, or if suddenly goes underwater (while playing in the pool), it might be extremely difficult to know if anything is wrong, even if he's being carefully observed. The neuro said that it's actually very unlikely that he would be in danger if he had a brief absence seizure while swimming (I'm not sure why, and we were so overwhelmed during the meeting that I didn't ask him to elaborate), although of course he said he needs to be monitored in a pool. I'm quite confused here. Next, exercise. During the 1-hour EEG, he only showed seizure activity during the hyperventilation portion, and a very brief episode almost immediately afterwards. That was later in the EEG, almost near the end. My son does a lot of physical activity. Tennis, karate, skiing and a sort of junior level crossfit program. Sometimes in the conditioning part of crossfit or during the exercise portions of class in karate, he does get extremely winded. Is that something that could trigger a seizure, given the hyperventilation results on his EEG? Finally, he's almost 13 years old. Yes, we do leave him home alone at times. Nothing crazy long, but maybe a couple of hours. Certainly we don't drag him out for errands, or things like that. Is that OK to do with absence seizures? His observed seizures have always been at absolute most, 10 seconds, and my husband and I are quite convinced they were more likely 5 seconds to be honest. None of his friends or teachers have noticed any. His Hebrew school cantor did see an episode a bit over a week ago, but that's it. Also, I'm terrified about what would happen if he had a tonic clonic seizure while we're gone. I know this could potentially happen someday, especially with the juvenile form of this. The medication he is on is Zarontin, which only controls absence seizures. Any thoughts or experiences would be greatly appreciated.

Comments

Hi Marcy,It is OKAY to treat

Submitted by mereloaded on Fri, 2017-05-05 - 16:26
Hi Marcy,It is OKAY to treat him like any other teenager. Remember, he is the SAME child before and after he was diagnosed. I'm pretty sure he went swimming before being diagnosed, right? Same precautions apply now.Yes, it is fine for him to be alone for a couple of hours. I send my (then) 15 year old to overnight camp in another state 3 years in a row ( by the way, they were skiing camps in NH). The nurse of the camp had his prescription and he was given his RX as prescribed. Remember, he is a teenager like any other and he needs and craves independence and privacy.I know, easier said than done. I know at the beginning I demanded my son to shower with the door open. He hated that. I used to ask him a hundred times a day if he was ok.etc.etc One day he to,d me that I was freaking him out!mand he was right, I needed to back off.Don't get me wrong, I still worry some, but have learned to put on a poker face and develop ways to monitor/help without hovering or making him feel different or causing stress. Because that same stress/sadness of your he dan feel it and he will feel guilty that he is causing you to cry/worry etc. I know it is so hard to find balance, you will get there, I promise. Your child is a normal 13 year old, he just have to take a pill daily and that is all. Go on with your lives and be happy. Life doesn't stop here.

I am constantly worried. My

Submitted by LauraL_59639f94d0d27 on Mon, 2017-07-10 - 11:51
I am constantly worried. My son is 16. He has a grand mal seizure seems like every 4 months not sure what triggers them. I'm an er nurse and have had many patients with seizures but when it's your child it so difficult to watch. He's been lucky that he's been at home for 3 times out of the 6 he's had so far. But I worry constantly  aBout swimming, water rides, being home alone. being out with friends, driving (he can't get his permit yet bc it hasn't been 6 months) but even then I would be totally worried. I don't even want to work far from home bc I'm afraid I wouldn't get to him in time.  I'd like to keep him home in my bubble but I know that's not right.  He plays baseball and so far he's been fine with that. I just feel so alone I have no one to talk to about this issue.  He takes keppra and seems depressed to me. I'd love to find him a support group for teens bc I know he feels so alone too. Thanks for listening 

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