Recreational activities and epilepsy

MJopson

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I'm a parent with a child with epilepsy. As a parent, very stressful with this recent diagnosis. If you have epilepsy, what recreational activities do you participate in, or avoid? What concerns do you have when participating? What precautions do you take, if any, that might be different than others without epilepsy? Or if you're a parent like me, then what steps have you taken? I'm trying to determine what activities my child should or should not participate in, and the reasons for and against. Any input would be helpful.
 

Nakamova

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Hi MJopson, welcome to CWE!

And hugs to you, you have a lot on your plate right now. Being a parent or caregiver of someone with epilepsy can be a particular kind of a stressor, especially with new onset seizures.

Generally speaking, when an epilepsy diagnosis is recent, it's best to be a bit conservative in terms of activities until you know how well the seizures are controlled, and have a better sense of how any medications are working, both in terms of side effects and efficacy. Hopefully your child's neuro can provide specific advice in this regard.

Everyone is different, but in my case I don't take any precautions except what would be reasonable for someone one of my advanced age (57). :)

I am fortunate that my seizures are currently fully-controlled with medication, so the seizure risks of any particular activity are relatively low. However, because I do have a lower seizure threshold than the average person, I try to get plenty of sleep, hydration and balanced nutrition, and I don't take psychoactive drugs. I don't go bungee-jumping or scuba-diving, since in different ways those can potentially stress the brain. Sports or activities with high concussion risk would be off the table.

You don't say what age your child is, or what activities he/she might ordinarily be expected to engage in. Are there specific ones that you are worried about?
 

Porkette

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Hi MJopson,

Welcome to CWE! Nakamova gave you some very good advice. I started having seizures when I was 10 yrs. old both absence and
complex partial seizures. (That was 49 yrs. ago) Whatever you do don't be over protective like my parents were. I couldn't do
anything like stay overnight at a friends house, or even walk next door to my Grandparents and my mom was watching every move
and that drove me crazy.

When I got older I would play volleyball, softball, and go mountain climbing when I got older. I loved to swim but I would wear
a life jacket while in the lake just to be safe.

My seizures were never fully controlled because I was drug resistant but I wouldn't let it stop me from going out and being
with my family and friends when I was older.

I wish you and your family only the best and May God Bless All of You,

Sue
 

valeriedl

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How old is your child? In general I don't see not letting them do any type of thing that any other child would do. The only difference is that I'd always make sure there's someone around incase something were to happen.

I'm 45 and I really don't like to do anything alone, even walking (if you consider walking a sport), but I live out in the farm lands. There's really one here except my family that live in houses spaced very far between each other, my big back yard that I walk in, and fields. I used to do it alone, with no one watching, but I had a seizure once. Luckily my brother saw me laying on the ground in the back yard. I do still walk but I make sure someone is watching me. I swim, but always make sure I'm not alone doing this. If they'd be swimming in a public pool I'd let the life guard know about the epilepsy just so they'd know that incase a seizure would happen.

As far as physical sports go there really shouldn't be any problems. Riding a bike, skating or skate boarding shouldn't be a problem but if they are falling too much when they are doing it then you might consider not letting them because that might cause problems. If you notice things happening while they are playing a certain sport, more seizures for example, then you might want to stop playing it too.

I agree with what Nakamova said too about the sports that she does. Also, as said, everyone is different so talk with your child's neruo and he might be able to give you some more advide.
 

MJopson

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All great responses and support....thanks Naka, Val, and Pork

My daughter is 12 y/o, diagnoses w/ focal epilepsy. She is very active in water-related sports - swimming, kayaking, sailing, hanging at the beach. There is already growing resistance to wearing a life vest, and am concerned about her resistance to a life vest as she get older, especially as a teenager. There must be something else out there besides a life vest or buddy system/chaperone to help protect my child and others who have epilepsy that engage in water activities.
 

Nakamova

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How well are her seizures controlled? That's a key factor.
I swim solo and without a life vest, but my seizures are controlled by meds.
 

valeriedl

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Kayaking and sailing are things that a life vest is usually, and should, be worn for. When my family did these things we all did.

However at the age she is she probably isn't going to want to wear a life vest. She probably won't want to wear one while swimming at all. Since none of the other kids aren't going to have on a live vest then she'll probably feel weird and/or get made fun of. She's at the age too that she probably won't want the tan lines that it will give her either. Unless there is someone there to make sure she has a vest on then good chances she wont.

I wish I could give you some more advice.
 

Matthew74

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I wish you the best. She's pretty young, so you have a responsibility to do what you think is best. Her resistance may not be so much to the particulars. She may see these things as signs or reminders that she is not normal, and she's trying to be normal. "Normal" in this case may be her old self.

I can tell you that one of my worst memories from growing up with epilepsy was being excluded from swim class. It was not done tactfully. As I remember it, there was virtually no possibility that anything would happen because my seizures only happened at night. I have had problems being excluded unnecessarily even as an adult.

Maybe she should be a part of the discussion of what to do and how. When you feel like other people are controlling or excluding you it can be extremely frustrating. She may be reluctant to acknowledge dangers, and as a youth is a bit oblivious to them, but she should be able to see the risks. It's like cycling (I do not drive). You are acutely aware of exaclty how dangerous motor vehicles are when you are wearing nothing but spandex and someone in an SUV is deliberately threatening you - much more so than the driver is. She may not see quite how dangerous the water really is until she really gets in trouble, but it's not hard to imagine. Everyone who swims has been slammed by a wave or caught in an undertow. I'm sure that she is aware. She may even be scared, even if she's trying not to think about it.

I've had some amazing experiences swimming and snorkeling. I can't do it often, but I'm very grateful that I can, even if it's with some risk. Unfortunately I will probably never get to go scuba diving, even though shallow diving in a full facemask with other people would be much safer than snorkeling alone. I've wanted to so ever since I was a child. I can't get a liscense, and they wouldn't refill my tanks. I've done a little sailing. Maybe she can get one of those fold up, auto-inflate PFDs that goes over your neck, and isn't so hot and bulky. Mine is nice. I can't stand regular life vests.
 
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