Parenting with epilepsy

[user1483743856]

I have a few questions with regard to parenting with epilepsy…. Dad with newly diagnosed.

Firstly, practical tips would be good. For handling both a baby and a 3YO. I’ve read online to change the baby on the floor, and carry upstairs in car seat. Is there any other obvious things? Is there a way of securing the pram (in case of seizures while pushing it)?

Secondly, is there an easy way of explaining to the 3YO? And reassuring him?

And finally, anyone know of any systems that alert a family member of a seizure? I found a SmartWatch App but it’s £6 a month with terribly reviews.

Any tips or advice etc. would be very appreciated.

TIA.

[MolliciousIntent]

I don't have any first hand tips, but friends of mine were in this situation - the mum was diagnosed and could never be left alone with the baby because of the risk of seizures. This was the case until they found the right cocktail of medication. I'm aware that's not a particularly reassuring thing to hear, but it is certainly something to consider.

[AlmondyCookie]

Don't give baths on your own. Long wrist strap on pram, so if were to fall won't pull it over but also can't roll off. Lots of useful books. I am sure the big epilepsy charities will have some recommendations on their websites e.g. Epilepsy Society and Epilepsy Action. Re alert apps, I have no recommendations.

[BakerJ]

Sorry to hear about your diagnosis, I hope medication brings it under control quickly for you.
I'm not a parent with epilepsy but I can share some experience on explaining epilepsy to a 3 year old as my child saw a family member have a few seizures.
We tried to explain it in terms they could understand so used very kid friendly language - their brain gets a bit muddled sometimes and tells their body to do the wrong things like go all shaky (tonic clonic seizure) or pause for a while (absences). We explained they can't control it so they aren't ignoring us or being silly and all they needed to do if it happened was get a grown up and we/they would keep them safe or call an ambulance if we needed to.
I'd also tmake sure your child knows the term epilepsy too if there's a chance they might need to alert unfamiliar adults.

[asmi254]

Hi! I know this is a bit late but I wanted to add to this thread because I found so little information when I was pregnant with my baby boy.

I've had epilepsy since I was 4 and I now have a 1 year old. My epilepsy had largely been under control for a few years before I became pregnant but during pregnancy and the tiredness of having a baby meant I started having seizures again - I even had two the day I got home from hospital!

It hasn't been easy and we've definitely benefited from a wonderful support system. At the beginning, I became depressed because I felt so dependent on others and really struggled with what I couldn't do - not being able to pick the baby up myself was the hardest, especially when they were crying. A volunteer nurse came to see me and gave me the best advice and it really helped me: your epilepsy means that you will parent your baby differently - but whilst some things will be difficult, doing things differently can be a good thing too: not being able to easily carry baby, for example, meant that we spent longer snuggled up on the couch after he fed and slept on me.

When baby was small I changed him on the floor and my partner carried him up stairs and over hard surfaces. Putting him in a car seat to carry him up the stairs just wasn't practical for us. We covered the house in foam matting to make things safer. I never stayed at home with baby by myself - when my partner had to go into work we went to my in-laws. I spent a lot of time going on walks, going to libraries, any public places where there were other people just to get out of the house and feel less dependent (we had a pram with a strap). We started up swimming at our local pool when he reached six months - it felt good to be able to do an activity like that with baby after spending all week feeling constrained - it was a baby class with an instructor and life guards so it felt safe.

Hope this helps someone :)