Absence seizures, swimming, exercise, and independence

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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

I forgot that the office does

Submitted by Elljen on Sat, 2017-04-29 - 23:47

I forgot that the office does have a patient portal, and I can ask questions. I have, literally, a list of them. For example, valerian root has sometimes helped with his insomnia, but I didn't know if it's OK for him to take that with his diagnosis and with his medication. I can definitely ask questions like that. He has a follow-up appointment in a few weeks, so all set there. We've been trying quite hard not to show our fears. I'm sure we haven't totally done so, and we'll work on that. One problem we have is that he tends to internalize his thoughts a lot. His brother is an open book. Him, not so much. We've always encouraged him to talk to us about anything on his mind. But sometimes he won't until he's good and ready. He used to go to a psychologist when he was a bit younger to help him with his anxiety. It was never crippling anxiety, just stuff on his mind. He'd been much better and hasn't gone in a while. I'm not sure if I should start taking him or not. I'm thinking I'll hold off, because I believe that if we begin taking him, it will make him think that there IS something to worry about (I mean, in a way there is, but I don't want to make it bigger than it needs to be, if that makes sense). This morning he seemed a bit moody and off. Not really like him. So I can't help but wonder what that was all about. Could have been because he's not a morning person (not surprising with insomnia). Could have been because, despite how well he has seemed to take all this, it's bothering him more than he lets on. Could have been because he's a preteen boy and moodiness is bound to start to appear. Could have been because of the meds (although at the time he'd only had one dose). Could have been any combo. Part of me is just a little extra concerned about all this because he's going to summer camp in a couple of months, and if the meds aren't working well or if he has a bad reaction to them, it doesn't give us a whole lot of time to try a new one. Of course, I'm also anxious with him going to summer camp with this diagnosis. Swimming in the pool, kayaking on the lake (they always wear life vests in the lake, although tipping over could still be hazardous), trip to the waterpark, and so on. We're still planning to send him unless something big prevents us (praying not, of course). We also spoke to one of the camp directors, and she was just wonderful. She said they've definitely had kids with epilepsy and they are highly prepared and experienced with it. It's a great camp with an awesome reputation and history, so I believe that. She said we'll talk about making sure he stays safe in the least intrusive way possible while having just as amazing a summer as he always has there. He also asked about skiing again. I know the rule is "if/when his seizures are under control." My husband flat at told him that he WILL take him skiing for sure. I don't know if that was the right thing to say or not. Honestly that is the plan, and I know it's what's most likely, but I still can't help question if he should have promised him that. I wonder how we'll know if his seizures are reduced. As it is, between us and the religious teacher, we only know of a few episodes over the past few months. I know he might have had more, but that's all we're aware of.Believe me, I don't want to baby him. I don't. I just don't want to be irresponsible either. Still learning, and I appreciate everything you have said to help me process all this.

I forgot that the office does have a patient portal, and I can ask questions.  I have, literally, a list of them.  For example, valerian root has sometimes helped with his insomnia, but I didn't know if it's OK for him to take that with his diagnosis and with his medication.  I can definitely ask questions like that.  He has a follow-up appointment in a few weeks, so all set there.  We've been trying quite hard not to show our fears.  I'm sure we haven't totally done so, and we'll work on that.  One problem we have is that he tends to internalize his thoughts a lot.  His brother is an open book.  Him, not so much.  We've always encouraged him to talk to us about anything on his mind.  But sometimes he won't until he's good and ready. He used to go to a psychologist when he was a bit younger to help him with his anxiety.  It was never crippling anxiety, just stuff on his mind.  He'd been much better and hasn't gone in a while.  I'm not sure if I should start taking him or not.  I'm thinking I'll hold off, because I believe that if we begin taking him, it will make him think that there IS something to worry about (I mean, in a way there is, but I don't want to make it bigger than it needs to be, if that makes sense). This morning he seemed a bit moody and off.  Not really like him.  So I can't help but wonder what that was all about. Could have been because he's not a morning person (not surprising with insomnia).  Could have been because, despite how well he has seemed to take all this, it's bothering him more than he lets on.  Could have been because he's a preteen boy and moodiness is bound to start to appear.  Could have been because of the meds (although at the time he'd only had one dose).  Could have been any combo.  Part of me is just a little extra concerned about all this because he's going to summer camp in a couple of months, and if the meds aren't working well or if he has a bad reaction to them, it doesn't give us a whole lot of time to try a new one.  Of course, I'm also anxious with him going to summer camp with this diagnosis.  Swimming in the pool, kayaking on the lake (they always wear life vests in the lake, although tipping over could still be hazardous), trip to the waterpark, and so on.  We're still planning to send him unless something big prevents us (praying not, of course).  We also spoke to one of the camp directors, and she was just wonderful.  She said they've definitely had kids with epilepsy and they are highly prepared and experienced with it.  It's a great camp with an awesome reputation and history, so I believe that.  She said we'll talk about making sure he stays safe in the least intrusive way possible while having just as amazing a summer as he always has there.  He also asked about skiing again.  I know the rule is "if/when his seizures are under control."  My husband flat at told him that he WILL take him skiing for sure.  I don't know if that was the right thing to say or not.  Honestly that is the plan, and I know it's what's most likely, but I still can't help question if he should have promised him that.   I wonder how we'll know if his seizures are reduced.  As it is, between us and the religious teacher, we only know of a few episodes over the past few months.  I know he might have had more, but that's all we're aware of.Believe me, I don't want to baby him.  I don't.  I just don't want to be irresponsible either.  Still learning, and I appreciate everything you have said to help me process all this.

I forgot that the office does have a patient portal, and I can ask questions. I have, literally, a list of them. For example, valerian root has sometimes helped with his insomnia, but I didn't know if it's OK for him to take that with his diagnosis and with his medication. I can definitely ask questions like that. He has a follow-up appointment in a few weeks, so all set there. We've been trying quite hard not to show our fears. I'm sure we haven't totally done so, and we'll work on that. One problem we have is that he tends to internalize his thoughts a lot. His brother is an open book. Him, not so much. We've always encouraged him to talk to us about anything on his mind. But sometimes he won't until he's good and ready. He used to go to a psychologist when he was a bit younger to help him with his anxiety. It was never crippling anxiety, just stuff on his mind. He'd been much better and hasn't gone in a while. I'm not sure if I should start taking him or not. I'm thinking I'll hold off, because I believe that if we begin taking him, it will make him think that there IS something to worry about (I mean, in a way there is, but I don't want to make it bigger than it needs to be, if that makes sense). This morning he seemed a bit moody and off. Not really like him. So I can't help but wonder what that was all about. Could have been because he's not a morning person (not surprising with insomnia). Could have been because, despite how well he has seemed to take all this, it's bothering him more than he lets on. Could have been because he's a preteen boy and moodiness is bound to start to appear. Could have been because of the meds (although at the time he'd only had one dose). Could have been any combo. Part of me is just a little extra concerned about all this because he's going to summer camp in a couple of months, and if the meds aren't working well or if he has a bad reaction to them, it doesn't give us a whole lot of time to try a new one. Of course, I'm also anxious with him going to summer camp with this diagnosis. Swimming in the pool, kayaking on the lake (they always wear life vests in the lake, although tipping over could still be hazardous), trip to the waterpark, and so on. We're still planning to send him unless something big prevents us (praying not, of course). We also spoke to one of the camp directors, and she was just wonderful. She said they've definitely had kids with epilepsy and they are highly prepared and experienced with it. It's a great camp with an awesome reputation and history, so I believe that. She said we'll talk about making sure he stays safe in the least intrusive way possible while having just as amazing a summer as he always has there. He also asked about skiing again. I know the rule is "if/when his seizures are under control." My husband flat at told him that he WILL take him skiing for sure. I don't know if that was the right thing to say or not. Honestly that is the plan, and I know it's what's most likely, but I still can't help question if he should have promised him that. I wonder how we'll know if his seizures are reduced. As it is, between us and the religious teacher, we only know of a few episodes over the past few months. I know he might have had more, but that's all we're aware of.Believe me, I don't want to baby him. I don't. I just don't want to be irresponsible either. Still learning, and I appreciate everything you have said to help me process all this.

Thanks for trying to keep me

Submitted by Elljen on Sat, 2017-04-29 - 23:47

Thanks for trying to keep me grounded. I'm still hovering a few feet above the floor right now, but I'm trying to get my feet solidly down soon. Yes, times have changed and we do monitor our kids extra carefully these days. I remember in the days before cell phones, when I was far younger than my son's age, riding my bike around the neighborhood (no helmet of course) until it was simply too dark to see anymore. No one gave it any thought.I guess I was just thinking that the only times we knew he was having an absence seizure were those in which he stopped responding to us if we spoke with him or if he stopped mid-sentence. If he were just hanging around a table with a bunch of people and zoned out while the rest of us were having a conversation, I'm not sure we'd have noticed anything. So my thought was that if he's not having a very visible, physical seizure, but was just sort of hanging out briefly underwater, he might not be noticed until he'd already be in trouble. I'm super sensitive to pool safety, because a couple of years ago we were at a pool party with MANY super responsible adults, and our friends' 3-year-old somehow ended up in the water just long enough to put her in serious danger. Her parents had so many safeguards in place. Life vest. A designated person to be with her and have eyes on her at all times. And a couple of others. But it happened during a transition time when people were packing up to go into the house for dinner. Should it have happened? No. People can accuse the adults/parents of being negligent. But I can't even begin to tell you how easy it is for one mistake to happen. Just one lapse. No one is perfect. And this little girl ended up being airlifted to the hospital. I will never forget the site of her as she was pulled from the pool. At first the doctors didn't think she'd survive. Then they didn't know if she'd have brain damage. Amazingly, she is 100% fine and a bright, bubbly, vivacious girl. But that image, that memory, is in the back of my mind and it's hard to shake. The camp has lifeguards. A pool director. A buddy system. Yet I still can't help but think, what if he is swimming face down in the water and the zone-out occurs then. Doesn't take long to inhale water. His neuro seemed to indicate it wouldn't happen like that. And, no, I'm not going to keep him from swimming. I'm not going to drive him crazy with worry about it. I'm going to let him go to camp and do his thing. And I will MAKE myself trust that everything will be OK.

Thanks for trying to keep me grounded.  I'm still hovering a few feet above the floor right now, but I'm trying to get my feet solidly down soon.  Yes, times have changed and we do monitor our kids extra carefully these days.  I remember in the days before cell phones, when I was far younger than my son's age, riding my bike around the neighborhood (no helmet of course) until it was simply too dark to see anymore.  No one gave it any thought.I guess I was just thinking that the only times we knew he was having an absence seizure were those in which he stopped responding to us if we spoke with him or if he stopped mid-sentence.  If he were just hanging around a table with a bunch of people and zoned out while the rest of us were having a conversation, I'm not sure we'd have noticed anything.  So my thought was that if he's not having a very visible, physical seizure, but was just sort of hanging out briefly underwater, he might not be noticed until he'd already be in trouble.  I'm super sensitive to pool safety, because a couple of years ago we were at a pool party with MANY super responsible adults, and our friends' 3-year-old somehow ended up in the water just long enough to put her in serious danger.  Her parents had so many safeguards in place.  Life vest.  A designated person to be with her and have eyes on her at all times.  And a couple of others.  But it happened during a transition time when people were packing up to go into the house for dinner.  Should it have happened?  No.  People can accuse the adults/parents of being negligent.  But I can't even begin to tell you how easy it is for one mistake to happen.  Just one lapse.  No one is perfect.  And this little girl ended up being airlifted to the hospital.  I will never forget the site of her as she was pulled from the pool.  At first the doctors didn't think she'd survive.  Then they didn't know if she'd have brain damage.  Amazingly, she is 100% fine and a bright, bubbly, vivacious girl.  But that image, that memory, is in the back of my mind and it's hard to shake.  The camp has lifeguards.  A pool director. A buddy system.  Yet I still can't help but think, what if he is swimming face down in the water and the zone-out occurs then.  Doesn't take long to inhale water.  His neuro seemed to indicate it wouldn't happen like that.  And, no, I'm not going to keep him from swimming.  I'm not going to drive him crazy with worry about it.  I'm going to let him go to camp and do his thing.  And I will MAKE myself trust that everything will be OK.

Thanks for trying to keep me grounded. I'm still hovering a few feet above the floor right now, but I'm trying to get my feet solidly down soon. Yes, times have changed and we do monitor our kids extra carefully these days. I remember in the days before cell phones, when I was far younger than my son's age, riding my bike around the neighborhood (no helmet of course) until it was simply too dark to see anymore. No one gave it any thought.I guess I was just thinking that the only times we knew he was having an absence seizure were those in which he stopped responding to us if we spoke with him or if he stopped mid-sentence. If he were just hanging around a table with a bunch of people and zoned out while the rest of us were having a conversation, I'm not sure we'd have noticed anything. So my thought was that if he's not having a very visible, physical seizure, but was just sort of hanging out briefly underwater, he might not be noticed until he'd already be in trouble. I'm super sensitive to pool safety, because a couple of years ago we were at a pool party with MANY super responsible adults, and our friends' 3-year-old somehow ended up in the water just long enough to put her in serious danger. Her parents had so many safeguards in place. Life vest. A designated person to be with her and have eyes on her at all times. And a couple of others. But it happened during a transition time when people were packing up to go into the house for dinner. Should it have happened? No. People can accuse the adults/parents of being negligent. But I can't even begin to tell you how easy it is for one mistake to happen. Just one lapse. No one is perfect. And this little girl ended up being airlifted to the hospital. I will never forget the site of her as she was pulled from the pool. At first the doctors didn't think she'd survive. Then they didn't know if she'd have brain damage. Amazingly, she is 100% fine and a bright, bubbly, vivacious girl. But that image, that memory, is in the back of my mind and it's hard to shake. The camp has lifeguards. A pool director. A buddy system. Yet I still can't help but think, what if he is swimming face down in the water and the zone-out occurs then. Doesn't take long to inhale water. His neuro seemed to indicate it wouldn't happen like that. And, no, I'm not going to keep him from swimming. I'm not going to drive him crazy with worry about it. I'm going to let him go to camp and do his thing. And I will MAKE myself trust that everything will be OK.

often a later eeg can help.

Submitted by Amy Jo on Mon, 2017-05-01 - 02:40

often a later eeg can help.

Absence seizures, swimming, exercise, and independence

Comments

I forgot that the office does

Submitted by Elljen on Sat, 2017-04-29 - 23:47

Thanks for trying to keep me

Submitted by Elljen on Sat, 2017-04-29 - 23:47

often a later eeg can help.

Submitted by Amy Jo on Mon, 2017-05-01 - 02:40

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