Any other parents with epilepsy?

[NatARG]

I'm a first time mum and I have epilepsy. I'm finding the sleep deprivation tough and constantly being on. My husband is amazingly supportive and helps a lot. Do you have any tips to share in being a parent and managing epilepsy? I'm so worried about having a seizure when out and about.

I have epilepsy, but I am lucky in that my medication controls it very well so I don’t have to worry about having seizures unexpectedly. I can imagine that would be very difficult to live with and I’m sorry I can’t offer advice on that. I had a lot of problems when pregnant with my third child though so I definitely know what impact it can have on the experience of being a parent. A woman I know who has epilepsy and is more prone to seizures told me she has an app on her Apple Watch that recognises if you haven’t moved for a certain amount of time. I’m not sure exactly how it works, but you could probably google it. And it then rings an ambulance. If you’re prone to seizures unexpectedly and you would have a child with you at the time then wearing a medical ID bracelet is a good idea, but I’m sure you thought of that. I think both UK epilepsy charities have advice on that kind of thing as well. And with the sleep deprivation, if that is a trigger for you then you may want to consider having relief from someone like a night nanny if that is an option for you financially. When I had my third child it was on the back of recovering from status epilepticus and I knew I couldn’t do all the nights on my own, even though I’d managed them with our previous two. So instead of spending money on a bit of help during the day we had a night nanny some nights a week early on. I still breastfed but it was a guarantee of an almost solid amount of sleep when she was there and it made all the difference for me and our family. But I know I am lucky that was an option I could consider. Sorry I can’t offer more practical advice but didn’t want to ignore your post.

Thank you- mine is generally well controlled but if I feel dizzy, I get so worried that I may pass out. I think having a baby has made me more anxious about it. Will look into the watch so thanks for the suggestion

Also, I'm sorry you had such a tough time with your third pregnancy and you've recovered okay.

I have epilepsy, I did struggle with sleep deprivation with my first two children. I just ended up sleeping as much with them as I could but also had to stop breast feeding and go onto bottles so my husband could give me a full nights sleep once or twice a week. That made a massive difference. Have you spoken to your specialist nurses? I found them very supportive and have lots of hints and tips on what you can do to manage baby's safety as well as your own. As my children got older my eldest was able to take my phone and access the SOS button to call my husband or mum as she could recognise my seizures so they could speak to her and keep us both safe if we were alone

Yes- I'll chat to the nurses as they were great during my pregnancy. SOS when older is a great suggestion.