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 so the risks to the baby 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. While it is important to take as many safety precautions as possible you need to be practical and be a Mum.
Another important thing I found was to work with your partner. 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 nights is crucial and my husband loves having time alone with Riley which also gives me a chance to have some me time. My husband is going to take Riley to baby swim classes too, which is something I can’t do because of my epilepsy but means Riley won’t miss out.
I do worry about having a seizure while being alone with Riley, but I am very lucky as my parents have bought me a wrist epilepsy alarm which would sense if I had a tonic-clonic seizure and would ring my Mum’s mobile. 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 could fall on her if I had a seizure. However often Riley won’t settle unless in my arms, which both puts her at risk of me dropping her if I have a seizure and from a practical Mum point of view I wouldn’t be able to get much housework done, she loves being in her carrier helping me do the housework and means a lot less screaming so less stress for me, so a case of weighing up the risks against the benefits!
Another adaption I have had done is I have had 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 choose 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. I have also added a harness (just the sort you get to attach reins for when they start to walk and try to run off) to my bassinette so Riley is strapped in which, if heaven forbid we were hit by a car, means she wouldn’t get thrown out.
Another worry I have is finding somewhere to change Riley when out and about as it makes sense to change her on the floor at home, so she doesn’t role off if I have a seizure, but doing the same in a public toilet… not very pleasant. A lot of baby changing facilities don’t have straps on, so I have scouted out all the local toilets in cafes and places and now know which baby changing facilities have straps. I have a few cafes which have won me as a frequent customer just due to a strap on their baby changer! It just happens they’re also good as they give the buy 9 drinks get 10th free card! I have also found that while Riley is still small I can change her in her bassinette if I have it on the pram.
Feeding Riley was another consideration, at home I usually feed her sitting on the floor with pillows around me or in the middle of your bed, however there have been times when I have found myself feeding her while rocking her in the rocking chair at 3am just to get her to sleep so I can get some sleep. Feeding on the floor is not always possible when you’re out and about, I do wherever possible try to find a comfy sofa rather than perching on a chair, or a nice shady place in the park if it’s a sunny day, but it is not always possible and I have never let my epilepsy stop me or my baby doing things, all my friends and family know about my epilepsy and so I know even though they don’t show it when we’re out together they’re keeping a close eye on me.
Sleep… your idea of a good night’s sleep is definitely re-evaluated when you have a baby, and 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 at night and the plan was if I was too tired we would re-evaluate. I actually found that feeding every 2-3hours even at night wasn’t too bad, I would sleep in the daytime when Riley was asleep too and now 12weeks on she goes 5hours between feeds at night so things are getting easier. My specialist also didn’t reduce my dose down to quite what it was before I was pregnant to try to reduce my risk of seizures due to sleep deprivation but this is something everyone needs to speak to their own specialist about.
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, but 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 anti-natal 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 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 and all work together if I need to get to and from somewhere if they can. I found buses a bit daunting to begin with, but I started by doing a short hop on the bus and built up from there, just takes a bit more planning with feeds and nappy changes, but found having a coffee on our own just before getting the bus gave me the chance to make sure Riley was all sorted before getting on the bus. I would always make sure I had her in her car seat if I went out anywhere on the bus, just in case I needed to get a lift or taxi back if I had a seizure or if Riley was just screaming too much!
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