Daughter had sensory seizure yesterday

[c-mac]

My daughter had her first daytime seizure. It was a bad smell accompanied eventually by headaches, twitching eyes, and tingling face. Our doctor is increasing the keppra to 4 mL twice a day. We're also going to try melatonin to get her sleep more on track. She sleeps so much now that she is missing school.

She sleeps with us now, all she has to do is kick the sheets off and I'm immediately out of bed, wide awake. I love this kid so much and don't want her to be scared. But how can I make her feel secure when I'm obviously scared?

[EpilepsyAction1 Partner Epilepsy Action]

Hi

c-mac

It is a very difficult time living with the uncertainty of your daughter having further seizures. It’s defiantly not easy, but with time, many parents find their own way of coping.

For this reason we have the following information to help parents and their children learn and feel as safe as possible:

You can download the information, or we can send information to you by post.

General epilepsy information for children. This includes stories and animations kids.epilepsy.org.uk/

Information for parents epilepsy.org.uk/info/childr...

Safety epilepsy.org.uk/info/safety

Daily living aids (alarm and phone apps) epilepsy.org.uk/info/daily-...

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. If you don’t hear from others in a similar situation, you may wish to try our other services.

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

twitter.com/epilepsyaction

epilepsy.org.uk/newsletter

Regards

Diane

Epilepsy Action Helpline Team

[c-mac in reply to EpilepsyAction1]

Thanks for the information, I'll look into it.

[Jennski01]

My daughter suffers from absent and grand mal. I have a video baby monitor in her room. She just turned 13. She's had them now for 3 years. I actually had a blow up bed in her room when they first started because we were changing medications a lot in the beginning and there were side effects.

When she has friends over during the day, etc. I give her privacy but at night the monitor is on. I've learned to sleep through certain "usual" noises by this point in time but I still don't really sleep through the night. I figure once she gets tired of me having a monitor, there are other options, like watches that monitor heart rate or falls, etc. I do have to admit though, when we go away and she is in the same room or in the bed next to me, I do sleep better so I understand your need to be close to her.

As far as school goes, she has a 504 plan. When she was in elementary school, if she didn't feel well or needed to put her head down (overtired) she was permitted to do so. There were times I drove her in before going to work just so she could get an extra 45 minutes of sleep in the morning. I still do that at times. I did it yesterday

[c-mac in reply to Jennski01]

I just got a call that my daughter was unable to read or follow directions at school, so she's coming home. This really sucks.

So the monitor works for you? I was looking at -- I think it's called -- the Smart Monitor, the camera with infrared that only comes on if it detects a seizure. I think we'll be ready for that in a few years ...