Concerns about baby’s development and usefulness of advice received

About a year before I became pregnant I read something about the contraceptive pill interacting with Lamotrigine and after yet another tonic-clonic seizure on quite a high dose of Lamotrigine I asked  my neurologist at that time about it, he just shrugged it off and seemed uninterested.  We planned to have kids in the future and I started to think how could I ever speak to my neurologist about it when he didn’t seem interested in anything?  I then asked to see an epilepsy nurse and as there wasn’t one in our area ended up being referred to London to the team there.  Since then my care has been amazing, I was right about the contraceptive pill, it could reduce lamotrigine levels and so I came off it.  My specialist put me onto the correct dose of 5mg folic acid (which helps reduce the risk of birth abnormalities) as my last neurologist had put me on too low a dose.

When I was 4 weeks pregnant I had a tonic-clonic seizure, at that point I didn’t realise I was pregnant.  I hadn’t had a major seizure in a year, which was a blow but seemed to be my normal pattern so I put my medication up as was the plan from my epilepsy specialist.  It was a week or so later I found out I was pregnant, I was so scared, on top of the chance of birth defects from my epilepsy medication, what could the seizure have done to the baby?  I rung my epilepsy nurse who reassured me the chance of it effecting the baby is low; it is if you go into status epilepticus that the baby is more at risk.  I was still worried at the 12week scan but when it was completely normal I was so relieved.  I asked if they could tell if the baby had cleft palette (the most common birth defect linked with Lamotrigine), she said they couldn’t see it on this early scan so couldn’t say for sure, but said she could see the baby’s stomach was full and often babies with cleft palate can’t swallow as well even in the womb.  We would never have had an abortion even if the baby had cleft pallet but it just put my mind at rest.  We had some extra scans to check for abnormalities and growth and they were all normal, in fact better than normal the baby was perfectly average in every way!  It was amazing to see our baby every time.

I always thought I wouldn’t worry about my child having epilepsy because the risk of inheritance is so small.  However now I have my baby I find myself worrying little things are seizures.  My baby has quite a strong startle reflex, I thought they were tonic seizures, but they are actually perfectly normal!