When I realised things were getting serious between me and my now husband, I went for preconception counselling. I had been on Epilim (sodium valproate) pretty much since being diagnosed at 15. I knew that Epilim isn’t ideal to be on while pregnant. As I had been seizure-free for about six years I was classed as low risk of having another seizure. The neurologist agreed I could gradually come off the Epilim and consider going onto lamotrigine if I started to get seizures.
The neurologist said most pregnancies weren’t planned, so I decided to come off my medication now - just in case there was a happy accident.
The neurologist mentioned the importance of taking folic acid before trying to conceive. I’m so glad I had a neurologist who knew so much about epilepsy and could deal with some of my fears and give me lots of advice.
I’ve since seen a neurologist who doesn’t specialise in epilepsy and wanted me to go back onto Epilim. This was even though I was pregnant and would want another child in the next few years. I also did lots of research on trusted internet sites and used the Epilepsy Helpline when I needed some advice.
I felt in shock after I’d done the pregnancy test. We had been trying for a baby for three months, but I wasn’t expecting the result to be positive. I assumed my period was late due to the stress of getting married in four days.
Tests and scans
At the 12-week scan my baby had her spine pointing towards the scanner so we got a great view of that. I was really pleased as I was worried in case her spine hadn’t formed correctly. I had been taking folic acid since I started trying for a baby. But I still worried, as people with epilepsy have a greater risk of having a child with spina bifida. I was also relieved there was only one baby there as twins run in my family. I was convinced there were two in there, as I felt so tired and looked quite big.
Coping with seizures
I had one seizure at five weeks (focal seizure), but no more during the pregnancy or labour. Having spoken to a few specialists, I went onto lamotrigine a few weeks before my daughter was born. This was to reduce the risk [of having a seizure] in the first few weeks and months after birth.
My labour ended up being 24 hours long. It started three weeks early. We were staying with relatives for the holidays and were due to head home on the day my contractions started. We had a bit of distraction as we had to ring the local maternity unit to find out if I could go there. Thankfully they said yes!
Sleep when the baby sleeps – the housework can wait. This is especially important in those first few weeks when your baby thinks night time is wide awake time.
Have lots of snacks and drinks around (or someone to get them for you) if you’re breastfeeding. You’ll be sitting around feeding your little one for quite a while in the early days.