Thoughts on preconception counselling

• What is preconception counselling?  

Jennifer B: – like a job interview!

At our preconception counselling, I was still at the stage of having about 40-50 petit mal seizures a month. I was on a low dose of lamotrigine, given our plans for children.

We were the first couple to be given preconception counselling in our area for those with epilepsy, and to be honest, it showed. We felt like we were at a job interview. There was a panel of six 'experts' on one side of the table, firing questions at us, with me and my husband on the other side, wondering if we should actually be pursuing having children or not.

Very unfortunate phrases were put forward, like ‘your child will be born addicted to your medication, so you'll need to breastfeed’.  

It took us three years from the preconception counselling to actually fall pregnant.  I'm pleased to say that they learned a lot in that time and became a lot more sensitive in dealing with couples.

The reproduction unit that we ended up dealing with were incredibly supportive.  They followed my lead in how I approached my epilepsy. I viewed it as an inconvenience and would not let it hold me back in any of my plans - while acknowledging my limitations, and any likely impact on children we would be lucky enough to have.

(Note from the editor. Petit mal is the older name for absence seizures. Sometimes people use petit mal to describe focal/partial seizures.)

Ingrid M: Things are getting serious

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 (the last seizure had been a year after coming off Epilim before), 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.

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