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of everyone affected by epilepsy

I’m the mummy

Many parents worry about keeping their baby safe. Many parents also worry about how they will cope with ‘sleepless nights’ and their seizure control. Our mums also worried about these things, but what was the reality? 

What if my symptoms return? 

Rebecca: I have been incredibly lucky as I’ve had very few problems since Max was born, despite being exposed to all of the main triggers! I do worry about the future, even though I know I am incredibly lucky to be as well as I am. What if my symptoms return? Will I be able to look after him? I worry that if I get really confused it could put him at risk in some way.

Motherhood is hard to put into words. It is a wonderful experience with moments of absolute amazement at this little person I've helped to create. Every time he does something new it feels like a little miracle (which sounds corny but I can't think how else to explain it!). At times it is so overwhelming that I wonder if I am really cut out for it, or if I'll be able to cope.

I haven't had much follow-up regarding my epilepsy since I had my son. I have had appointments with midwives and health visitors, but they haven't really asked about my epilepsy until I have mentioned it. Early on I think a couple of the midwives asked if I was taking my medication. I must admit I did forget to take it a few times, in the first couple of weeks. The days and nights became a bit of a blur and so I would lose track of what time of day it was! I started writing it down which helped.

One thing that did worry me a little is that I felt under a lot of pressure to breastfeed. I tried very hard, but found it wasn't working out for me. I felt under a lot of pressure from midwives, even after I had decided to stop. This worries me a little. Feeding was much more frequent when breastfeeding compared to feeding from a bottle. Also, although you can express milk it is harder for someone to share the feeding duties with the mother if you breastfeed. These things mean that sleep is more likely to be disrupted and midwives could be more conscious of that issue. For women with epilepsy irregular sleep patterns are a trigger of seizures.

Is breast best?

Nicola: Epilepsy has not affected my being a parent. I have gradually reduced my drugs back to my pre-pregnancy dosage and I haven’t had a single seizure. 

I made the decision to breastfeed having talked it through with my neurologist. There’s definitely no right answer to that one, but I felt that the benefits of breast feeding outweighed any small risk of the medication being passed on to my baby through my breast milk.

I breast fed through the night until six months when we switched to formula. I still have to get up, as it is impossible to get Gerald to wake up in the night. Once I slept in the spare room to get some decent kip. But was woken up through two doors and half a flight of stairs by Oliver crying, and Gerald was still fast asleep! 

I'm not sure if I had ‘pregnancy brain’ as I am so scatty anyway. It's a side-effect of my epilepsy which doesn't help! However, since having Oliver (Mr Wrigley's real name) I think I have got worse (nappy brain). I've left my handbag in a cafe and at the checkout in Tesco twice. 

Now I have enlisted the help of all my friends to help me check that I haven't left anything behind. I also have a mnemonic to help me remember to take the most important things when I leave the house. ‘Monkey's phone bill', which means: money, keys, phone, and pills.. So far I have not left my baby behind anywhere. But I have heard stories of people (not with epilepsy) who have, which made me feel a bit better!

It’s hard work, sometimes relentless, and very tiring. But at the same time it is completely amazing, brilliant, fabulous, crazy, the best thing in the world.

What is a goodnights sleep? 

Clair: 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 got by with a little help from my friends

Emma H: I breastfed both Megan and Chloe. I heard a lot of things about not being able to breastfeed because of the medications. But my consultant reassured me it was fine. The only problem for me would be the night feeds and exhaustion you feel in those first few months. 

My medications make me sleepy anyway – so for the first few months I felt like a zombie.  The age gap between the girls is 19 months. Having a toddler and newborn would be hard work, even for someone who doesn’t have epilepsy.

Fortunately for me I had an excellent support network. To allow me to sleep when I needed to – I called in help from acrossEngland! My husband took time off work; Mum came from Leicestershire and my sister from Warwickshire.

I was also fortunate that Megan was still going to nursery one day a week. This gave me a little time catch up on sleep while Chloe was sleeping.  I was that tired I used to have to put an alarm on my phone to remind me to take my epilepsy tablets!

And my health professionals - I would have preferred more support from my health visitor, but I can understand they are busy.  Had I not had such a wonderful GP and consultant, I really wouldn’t have known where to go when things were getting tough during the pregnancy. 

Chloe is now eight months old and I am still on the high dosage of medication that I was put on during my pregnancy. My consultant thought this was best – because tiredness is a trigger for my seizures and having two little ones can make you feel a little lethargic!  I am due to have a treatment review with him when Chloe turns one, but I can contact him anytime should I need to discuss anything.  

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