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 will use my experiances for

Submitted by just_joe on Sat, 2017-04-29 - 22:01

I will use my experiances for theseFirst is swimming. Thee neurologistsaid he could but he needs to have an adult with him. Well I swam with friends with me. It wass different bacj in the 1960's. If in the pool there were life guards and yes they kept an eye on me. If I had an absence seizure I would have stopped moving altogether for a short period of time. So yes people around him would see him if he had one. I swan in the creeks and rivers. The lake on the mountain had a better swimming hole so a bunch of us went there. So yes he can swim but with somebody near him. I swan in the pacific ocean and salten sea. several bays in Texas and differet rivers i Texas and New Mexico. Hey cooling off in the water does help when the temp you are in is generally running in the mid 105 area.Next, exercise. During the 1-hour EEG, he only showed seizure activity during the hyperventilation portion, The EEG is a test and the hyperventalation is a part that will generally show activity. Just showing activity does not mean they have a seizure during the test. If you researched you would see that there are pro athealetes that have epilepsy. A college coach is an epileptic and he makes his guys work and he works with them. there is an area in this site that have atheletes in it. I ran track faster then many track runners and the coaches wanted me on the team. It was my parents that kept me off the teams. 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. Leave him alone and go places. He is no diffferent then his friend living down the street.. Mom worked Pete was in traction in the hospital I wa the one that took care of Tim 9born when I was 15) I changed his diaper and fed him. I made sure he was safe, I did my homework on the coffee table which he would have rolled offf of if he wanted off the couch. Just use common senseHis Cantor noticed them so he did gt noticed.As for being terrorfied if he has a tonic clonic seizure. Please to not thik about them. Because it can stress you and at his age he does know that you get stressed. Stress is a tirgger for many people and seeing your stress gives him some. As for the ZArontin it was created to treat asence seizures yes, But after testing and being approved for use the testing does ot stop. It is then tested to find out the other seizures it can treat. It is also tested to se which medications it can be coupled with to treat seizures. I haven't had an absence seizure since about 1964. I have taken Zoranton and yes it works on my seizures which can land in partial seizures. All of the partial seizures I can or have had. So relax and do watch for his absence seizures. For all youknow he may never have another seizure. My seizures changed and today I know when I have them and that they affect my right hand for a few seconds. I am aware of everything going on and you wouldn't know I had one even if you were watching for it.As he changes from a kid to a teen he does need to be checked and during that timehis dosages may need to be adjusted. I changes from a 4'8" 85 lb. brat to a 5'6" teen that was a lot stronger. My medication dosages were changed 3-4 times in a 12+14 month period of time.You are on the site that can give you information about his seizures and many other things. Start in the learn section.Typical Absence SeizuresThese seizures are the most common.The person suddenly stops all activity. It may look like he or she is staring off into space or just has a blank look.The eyes may turn upwards and eyelids flutter.The seizures usually last less than 10 seconds.

you are going to need to

Submitted by Amy Jo on Sat, 2017-04-29 - 22:14

you are going to need to learn to step back from your fears and trust your doc because the downside to feeding your fears and being overprotective can stunt his development. our hospital has a patient portal system to send questions which can be answered a few days later, before that one could leave a message on the nurse line (still can but those are now for questions that need a business day turn around) and for pressing issues one can call the on call doc (often a neurology resident after hours). find out how your doc's office can get you answers (keep questions short and direct). if you don't know already, ask if there will be a follow up eeg to see if the medication is working once he's been on the target dose long enough. I think that once you know the absences are controlled (usual situation) or greatly reduced then that will help you. living in fear is not living. your son will catch if you are very fearful and that can also impact him negatively so consider talking to someone if you think a coach to get you over this would help you. it does take time to process this diagnosis but you don't want to be someone stuck in fear.

I forgot that the office does

Submitted by Elljen on Sat, 2017-04-29 - 23:33

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.