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of everyone affected by epilepsy

 

Clair

Planning

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).

The moment I knew I was pregnant

When I was four 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, so it was a blow and my medication was increased.

It was a week or so later I found out I was pregnant. I was so scared. On top of the risk of birth malformations from my epilepsy medication, what could the seizure have done to my baby? I rang my epilepsy nurse who reassured me the chance of it affecting the baby is low. It is if you go into status epilepticus that the baby is more at risk.

The first 12 weeks

I also suffered from morning sickness. I discussed this with my epilepsy nurse who said: “If you can see the tablets in the vomit, retake them”.

A bit disgusting but made sense! However my morning sickness built over the morning. I only actually vomited after about 9am, so I made sure I took my tablets plenty before that.

Tests and scans

The most amazing part of every pregnancy I think - for most people - is seeing that first scan. It makes it all real. Up until that point I didn’t quite believe it. I thought I was just going to feel groggy for the rest of my life!

However, I was still worried about whether my medication or my seizures had affected my baby. When the scan was completely normal, I was so relieved. I asked if they could tell if the baby had cleft palate (the most common malformation linked with lamotrigine). She said they couldn’t see it on this early scan, so couldn’t say for sure, but said that she could see the baby’s stomach was full. Often babies with cleft palate can’t swallow as well (even in the womb). It just put my mind at rest.

Coping with seizures

I take lamotrigine. Pregnancy can have quite an effect on the level of medication in your blood - reducing it because your metabolism is sped up and because you have a lot more blood in your body.

My specialist organised regular blood level checks and my lamotrigine dose ended up going from 400 mg at the start of my pregnancy to 600 mg by the end. My dose was reduced as soon as I had the baby. I now take 450 mg, slightly more than before I was pregnant to take into account sleep deprivation which comes with a baby!

Preparing for the birth

My epilepsy specialist worked with the hospital I was having my baby at, to put a plan in place for the labour. Diazepam was made available in the room (to be given if I had a seizure). I took 10mg of clobazam every 12 hours during labour to boost my seizure threshold a bit. I also saw the anaesthetist during pregnancy to discuss epidurals. It was decided I should have one early to control the pain (which I was concerned could trigger a seizure) and also to make it easier to carry out a caesarean in an emergency.

It is really important you always follow your specialist’s advice. It is so important to feel confident in their knowledge, able to ask questions and clarify what they say. You should also feel able to share your feelings and worries with them. It is also important to make sure your partner is happy with the plan too.

I was particularly lucky in that my friend (from when we were two and a half) was a student midwife at the hospital where I was having my baby. She used me as a case study so attended all my appointments, helped deliver my baby and had really looked into epilepsy. She made sure all the plans and information were clearly in my notes and was a really good advocate for me, throughout. I would definitely say if a midwife student does approach you as a case study, do consider agreeing. I know it’s not for everyone, but it means that they will become more specialised in looking after women with epilepsy. They can actually benefit you by knowing everything about your pregnancy and labour plans. They won’t deliver your baby alone and you can decide exactly how much input they have. Just something to consider…

Labour

I was particularly lucky in that my friend (from when we were two and a half) was a student midwife at the hospital where I was having my baby. She helped deliver my baby and had really looked into epilepsy.

My husband played such a huge part in my pregnancy and labour too. He was amazing, always there to support me. The labour was as hard for him to watch as for me to go through. In the end my labour wasn’t straight forward, but it had nothing to do with my epilepsy. After 24 hours of labour and a tug of war with forceps - baby Riley Elizabeth was born on 3 June, Jubilee bank holiday, (very patriotic, although that’s not why we chose the name!), weighing 8lb 8oz.

Life as a new mum

Early on in my pregnancy I saw my epilepsy nurse. He was very supportive and we discussed being a mum with epilepsy. He said that although I don’t get a warning before my seizures, they are very infrequent. For this reason, the risks to the baby [of me having an accident during a seizure] are reasonably low. He made it clear it is important to remember you are a mum who happens to have epilepsy, not someone with epilepsy who happens to be a mum.

My husband and me are a little team. We discuss everything. We’ve come up with ideas of how to make things as safe as possible, while being practical together. Sharing night feeds is crucial and my husband loves having time alone with Riley, which also gives me a chance to have some ‘me’ time.

Sleep… your idea of a good night’s sleep is definitely re-evaluated when you have a baby. This can increase the risk of seizures, something I was very worried about. We had considered giving her a bottle last thing at night, to try to get her to sleep through, but when it came to it I wanted to try to breastfeed. The plan was to try breastfeeding and if I was too tired, we would re-evaluate. I actually found that feeding every 2 – 3 hours even at night wasn’t too bad. I would sleep in the daytime when Riley was asleep too. Now 12 weeks on, she goes five hours between feeds at night, so things are getting easier.

I do worry about having a seizure while being alone with Riley. I am very lucky as my parents have bought me a wrist epilepsy alarm. It will ring my mum’s mobile if I have a tonic-clonic seizure. It has made me feel more confident and makes sure Riley is as safe as possible.

I always carry Riley up and down the stairs strapped into her car seat. I wasn’t planning to use a baby carrier as I could fall on her if I had a seizure. However, often Riley won’t settle unless in my arms. This put her at risk of me dropping her if I had a seizure. From a practical mum point- of-view, I couldn’t get much housework done. She loves being in her carrier helping me do the housework. This means a lot less screaming so less stress for me. It’s a case of weighing up the risks against the benefits!

Another adaption I have had done is a dead brake put onto my pram. They don’t make prams with these brakes but a charity called re-map made them specifically for the pram we chose which was amazing. Lots of people have actually said it is easier to use than having to faff about with the normal brakes on most prams.

Not being able to drive can be very isolating, I found when I had a Riley it was particularly hard. On a lovely sunny day you can get out the house and go for a walk. When it is cold and raining, being stuck in the house all day, I found really hard. When you have a baby you always get lots of people wanting to visit. I remember in my antenatal classes the midwife saying “you probably won’t want to have visitors to begin with”. Well I definitely used them to my advantage. I took up every offer of visitors, lifts to places, cake! As soon as I could I found local baby classes. It helped me meet new mums and the sensory group I attended gave me lots of ideas to keep us amused on a rainy day. I am also very lucky that my family and friends are very supportive.

Final thoughts

Lastly the everlasting bond people talk about doesn’t always occur straight away. I loved Riley so much and wanted to provide for her. I remember feeling bad for feeling relieved, when the midwife came and took her for a bit, on our first night. I was exhausted. The bond is built over the first few weeks. When she gave her first proper cheesy grin I knew I’d do anything for her. Just don’t feel bad if the feeling isn’t there straight away, it will come. Motherhood is a huge change, it takes time to get used to and time to get to know each other, with or without epilepsy.

Clair
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