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of everyone affected by epilepsy

The baby planners

Epilepsy Action successfully campaigned for all women with epilepsy to receive information and counselling on contraception, conception and pregnancy from their health professional. This is to make sure that you are offered reliable contraception (when you don’t want a baby). And to put you in the best position possible before you become pregnant. So how useful were these ‘baby planners’ for our mums?

The best advice is personalised

Rebecca: When I was diagnosed in 2008 my symptoms were quite severe. I wasn't able to work and day-to-day tasks were a struggle. At this point I thought I might never be able to have children, as there was no way I would be able to look after a baby. As my symptoms improved it started to seem like a possibility again.

My neurologist was really helpful. She had prescribed folic acid when I was first diagnosed [with epilepsy] so that was already covered. She talked to me about the increased risk of birth malformations while taking anti-epileptic drugs (AEDs). We also talked about the likelihood that seizure activity can increase towards the end of pregnancy. I was told that I would probably need to increase my medication in the last trimester.

I was also given the number for a research nurse from the UK Epilepsy and Pregnancy Register. The conversation I had with her was very helpful. She talked to me specifically about lamotrigine. She explained it was one of the safer drugs, but that there was still a small increased risk of birth malformations.

She couldn't tell me what to do of course, but my decision was starting to sway towards carrying on with the medication. I had to weigh up the risk of my baby being affected by the medication, against the risks to us both, if I had uncontrolled seizures.

Finding an epilepsy specialist nurse was a real turning point

Clair: About a year before I became pregnant, I read something about the contraceptive pill interacting with my anti-epileptic drug (AED), lamotrigine. After yet another tonic-clonic seizure I asked my neurologist about it. He just shrugged it off and seemed uninterested.

We planned to have kids in the future. I started to think how could I ever speak to my neurologist about it, when he didn’t seem interested in anything? I asked to see an epilepsy nurse. There wasn’t one in our area, so I was referred to the team in London. Since then, my care has been amazing. I was right about the contraceptive pill. It could reduce lamotrigine levels and so I came off the pill. My specialist also put me onto the correct dose of 5mg folic acid (which helps reduce the risk of birth malformations).

I came off my medicine and found that I still had epilepsy

Faye: I was aware that as and when I wanted to have a baby, I should discuss my plans with my GP and (if necessary) a neurologist. I had assumed at least a six month lead in time to trying to get pregnant. So I went to my GP to discuss it in late 2010. She had a few concerns and referred me to a neurologist at my local hospital.

My neurologist noticed that I had not had a trial withdrawal from my medication. He would have recommended that I had a trial withdrawal, at the age of 20 - 21. This is because some people no longer have epilepsy once they come out of puberty.

So I faced a choice; a trial withdrawal of my medication or continue to take it. I knew there was a possibility that I didn't really need it anymore. But it seemed like a much bigger decision now, than it would have been if I was younger. It felt like I had a lot more to lose. I was now married, hoping to have a family, and had a demanding job. But I knew if I didn't do it, then I probably would never do it, so we went ahead.

My medication was reduced over a period of two months. The day after I stopped taking my medication completely, I had a series of fits. So it was clear, I still had epilepsy. I went back onto my medication, but it was physically difficult. I felt very disoriented and exhausted as my body readjusted to the drug. It took about two months before I felt back to normal again. Overall the entire process was not much fun, and hard on my family. But it’s good to have clarity on the situation.
Once that was all over, I could get back to the reason we started the whole process in the first place, trying to have a baby. My GP was really firm that I should take a 5mg dose of folic acid every day for three months, before trying to conceive. A further delay, but that was ok; it gave us some time to adjust to the idea.

I got the supported I needed to make an informed decision about my medicine

Emma H: We have always wanted a family. But we were also concerned about the risks of malformations to the baby.
My consultant was excellent. We were given all the information we needed to make a decision about my epilepsy care and treatment - before I became pregnant.
Not only was I taking valproate - but I was also taking lamotrigine. Taking two epilepsy medicines is said to carry a higher risk than taking just one. But for some of us, taking one medicine hasn’t effectively controlled our seizures.
However, I understood all the risks - which to me were small taking into account the other option of coming off medication altogether. This could cause me to have frequent seizures - not only risking my health, but also that of my unborn baby. For me it was a simple decision.

It was like a job interview- but things have improved a lot since 2004

Jennifer: When we went for preconception counselling (in 2004), 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). 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. They fired questions at us. Me and my husband sat on the other side of the table, 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. I wouldn’t let it hold me back in any of my plans. But I acknowledged my limitations, and any likely impact on children we would be lucky enough to have.

(Note from the editor: petit mal is an older term for describing seizures that is not often used today. Petit mal seizures are now usually referred to as absence seizures.)

I had been seizure free for six years- did I still need epilepsy medicine?

Ingrid: 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.

My epilepsy specialist nurse helped me take control

Sarah: I did not have any pre-conception counselling before I fell pregnant with my first child. Louie was a surprise!

As soon as I found out that I was pregnant I phoned my epilepsy specialist nurse (ESN). She was really helpful and made sure that I had all the information I needed to get off to a good start. She also spoke to my consultant and midwife to make sure that I received the right care for both my pregnancy and my epilepsy.

I have always found my ESN a key part of my epilepsy journey. She gave me confidence in how I cope with my condition and helped me communicate with my workplace and family about my epilepsy.

So when we started to think about planning a second pregnancy, I contacted my ESN to make an appointment. During my appointment we discussed all of my worries and care options. My ESN gave me all the facts related to pregnancy, epilepsy and epilepsy medicines and told me to take folic acid before we started trying for the baby.

I had seizures in my first pregnancy, so I decided not to change my medication at all during my second pregnancy. I wanted to protect my baby from my seizures as much as I could. I was taking lamotrigine and agreed to have my blood levels regularly monitored. This is because a drop in my lamotrigine levels during pregnancy could make a seizure more likely to happen. 

The responsibility of caring for a toddler (Louie) as well as myself and my unborn child was really daunting. I wanted to make sure that I could still care for and keep Louie safe – having seizures again could pose a problem. My ESN reassured me that my team would keep a close eye on my lamotrigine levels. She empowered me to keep healthy and be observant of what my body was doing.

By the time that I left her office, I was fully reassured and encouraged that baby number two was the right thing for our family. 

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