Sunday 30 September 2012

1 year since my last major seizure....

So it's been a whole year since my last Tonic-Clonic seizure, I've had quite a few focal seizure but only a couple of small ones since Riley's arrived which a miracle really considering the lack of sleep.

For most people 1year is a hurdle overcome, for me it is scary, it's usually a year between my seizures, I find myself thinking a lot about what if I have a seizure right now.  I have had Riley in her carrier a few times recently and found myself worrying, on the whole I try not to think about it but just recently I find myself worrying more.

I also have the decision to make about medication, 450mg Lamotrigine puts the chance of birth defects in a baby to 6% (according to the research on epilepsy action's website), so if we want to have another baby the risks are far greater... so do we try something else, but then the risks of more seizures are high till we get the dose right... that would put Riley at risk...

So at the moment the Jury's out, but I think right now Riley is the priority, another baby can wait but at the moment all I want to do is do everything I can to keep Riley safe while giving her all the best experiences I can in life.

17 weeks ~ standing up

I find it amazing how much Riley changes everyday, the last few days she has been really giggling, today we popped into work and she was just so smiley. I feel very lucky that she is so alert and interested in everything. Even if it does mean she doesn't sleep very much and needs a lot of entertaining. But have got lots of tricks up my sleeve - sensory box, tummy time activities and long long walks even in the pouring rain (and together with breast feeding I've shifted the baby weight!)

She's started looking at things and really studying them, she's found her feet and Yesterday she put her feet up on the bar of her buggy really purposefully.  It's all the little things that make me realise how much she's changing and growing up so fast. The most moving thing this week is she can stand up at the window on her own holding onto the sofa :)

Sunday 23 September 2012

16 weeks ~ giggles

Riley's 16weeks today! Time has just flown by.  Today we went to the Aquarium in Brighton, Riley seemed to love it.  All the colours, lights and fish moving around.  We went on the pier after too, in the pouring rain, but Riley was fine in her little bubble of a buggy.

She's started giggling this week and is much more interested in the world. We went to the nest baby group on Thursday, Riley was sitting opposite another little girl and seemed to be really looking at her.  She really is amazing and so good, she smiles and is so alert and happy so much of the time.  She is also getting very strong standing up and looking out the window while holding onto the sofa!

Her sleep is still a little hit and miss, but she's sleeping in her own big cot now which is good and seems a bit better, taking less time to settle, but still away to go but we're testing there :)

Thursday 6 September 2012

Sleep... ~ a massive issue at the moment

Sleep seems to be one of the biggest issues when it comes to babies and one of the hot topics at the baby groups I go to...

Everyone expects to have sleepless nights and you idea of a good nights sleep definately changes when you have a baby.

There is no right and wrong and no easy way to get into a routine and especially when lack of sleep can trigger seizures it obviously an important issue.  But there is no quick fix it's just important to have some help, Rich and me work as a team, I feed her and if she doesn't settle after Rich will try to get her off to sleep.

A bottle before bed can often help them sleep better but I have persisted with breast feeding (which does mean she won't sleep through the night, needing 1-2 feeds) and touch wood haven't had any seizures so I will continue.  I think things are getting better but it is difficult to see the improvements... one of the things she is really bad with is she just won't settle herself, we have tried dummies, mobiles, music - the only way she falls asleep is rocking in our arms and then being placed down quietly but often she just wakes up... I am hoping it gets better.

Bedtimes are another issue... to begin with she went to bed with us at 10-11ish but as she's got bigger it's moved earlier and now we start our bedtime routine at 7ish, wash/bath, feed and story, bed!  Only problem with that is Rich doesn't get in from work sometimes before she's asleep.  Then if he gets up for her in the night she becomes wide awake smiling and babbling away to him!

The other issue we need to address is moving her into her big cot... at the moment she is in a carry cot but she's getting pretty big in it.  We keep saying when she sleeps well in that we'll move her into the big cot, but I think we might just need to bite the bullet and go for it!  Also I'm thinking a lunchtime nap might help so maybe if she's in her big cot at night I could try to settle her in her travel cot downstairs in the day so I don't have to keep putting her in her car seat to go up and down the stairs...

It's a plan, we will see what happens... watch this spacce!

Wednesday 5 September 2012

Start of up-to-date blog : 13 weeks

Up until now my blog has been looking back on my pregnancy and the first 3 months of Riley's life, now I am going to write about my life as a mum as I go along...

Riley is now 13weeks, what can I say abour her... she smiles lots, babbles away to us, likes to stand up while being held, lies on her tummy lots.  To me she is amazing in every way.  From now on my blog will follow our life as a little family and following Riley's development.  I will also write about my epilepsy, and how it impacts on my life and life as a mum.

So... week 13

Last weekend we went to the paralympics, we saw wheelchair basketball on Saturday and equestrian dressage on Monday.   Riley was on the most part a star, she is very inquisative and was really happy to watch everyone and take in the atmosphere (which was amazing, everyone was so friendly and enthusiastic) we even got to see Natasha Baker win Gold and got to stand to the National Anthem at the medal ceremony... amazing.  We were a bit worried about the noise so we got her the rather fetching ear defenders pictured below!  She actually didn't mind the noise but we thought we should put them on to protect her little ears.  All the volunteers were amazing, so baby friendly... from the man on the gate at our local station who gave us a map and explained ther best route to keep moving and away from the crowds, to the lady who hustled us into the shade, finding us a chair so we didn't have to que in the hot sun!  It was amazing!

I think however it may have been a bit over stimulating for a little person as she really wouldn't settle to sleep after, but it was a once in a lifetime oppertunity so we had to do it and now we can say to Riley you were there.  It was also very hot at the dressage, over the day we stripped layers off until by the time we got off the train she was just in a nappy!

Another very useful piece of equipment for going to busy places where it's just not practical to take a push chair... a Moby Wrap, from an epilepsy point of view it may hold some risk but from a practical point of view it was great she loved it as she could see out more than in her other carrier... weighing up the risks is one of those things that you have to do with epilepsy.  You just never know when a seizure might happen but you can't spend your whole life avoiding everything just in case...

Memorable pregnancy moments

One of 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!  I also loved hearing baby’s heart beat at every check-up, midwives are definitely better at giving you time to listen to it than most doctors!

Feeling the baby move is incredible, I didn’t find the first few movements were much, but as she grew being able to see a hand or foot sticking out was amazing.  I remember one day sitting on the floor at work with a child and the clown doctor was making him a balloon animal, suddenly the balloon popped, the child jumped, I jumped but most amazingly my baby in my tummy jumped, it made me realise that I had a little life forming inside me, made me treasure it even more.

A strange memorable moment during my pregnancy was liking chocolate again… sounds strange but the main reason I took a pregnancy test was I couldn’t face chocolate just like my Mum couldn’t when she was pregnant with me.  For a chocoholic that was very strange, I remember sitting at a Christmas dinner watching everyone eat chocolate fondants and feeling very strange because I knew I should want one, but couldn’t face one!  Then sometime after 20weeks I started enjoying eating chocolate again, yum,yum!

The first proper cuddle with your baby is amazing, we didn’t get a proper cuddle for a couple of hours, just a quick one in theatre which I only vaguely remember, as we were neither of us very well after delivery.  But that first proper cuddle when everything was calm again… I remember my friend carrying her in to me (as she was a student midwife and had helped deliver Riley!) that first proper cuddle and starting to feed her I will never forget. 

Lastly, something I wish someone had been honest enough to tell me, and which I think is important to acknowledge otherwise I think a lot of new mothers feel something is wrong.  The everlasting bond people talk about doesn’t usually occur straight away… I loved Riley so much and wanted to provide for her, but I remember feeling so bad when the midwife came the first night and asked if I wanted her to take her for a bit, feeling relieved, I was exhausted.  But the bond 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.  

Now 12 weeks on I love being a mum, watching Riley learn new things all the time is amazing. I love her so much. We are a proper little family.

Impact of epilepsy 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 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!

Problems and issues that occurred during pregnancy

I take Lamotrigine, pregnancy can have quite an effect on the level of medication in your blood, reducing it both because your metabolism is speed up and you have a lot more blood in your body.  My specialist organised regular blood level checks and my Lamotrigine dose ended up going from 400mg at the start of my pregnancy to 600mg by the end.  My dose was reduced as soon as I had the baby, I now take 450mg, slightly more than before I was pregnant to take into account sleep deprivation which comes with a baby!
I also suffered from morning sickness; I discussed this with my epilepsy nurse who said if you can see the tablets in the vomit to retake them, bit disgusting but made sense.  However my morning sickness built over the morning and I only actually vomited after about 9am so I made sure I took my tablets plenty before that.
My epilepsy specialist worked with the hospital I was having my baby at to put a plan in place for the labour.  I had an IV put in as soon as I arrived in hospital with IV diazepam in the room to be given as soon as I started to seizure.  My specialist recommended I took 10mg of Clobazam every 12hours 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 could trigger a seizure and also to make it easier to carry out a caesarean in an emergency without having to have a general anaesthetic, if for example, I had a major seizure.  It is really important you always follow your specialist’s advice, which is why it is so important to feel confident in their knowledge, feel able to clarify and question what they say and also be able to share your feelings and worries with them.  It is also important to make sure your partner is happy with the plan too, my husband played such a huge part in my pregnancy and labour, he was amazing, always there to support me, the labour was as hard for him to watch as for me to go through.

I was particularly lucky in that my friend (from when we were 2 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; she helped deliver my baby and so 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 and 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…

In the end although my labour wasn’t straight forward it had nothing to do with my epilepsy and after 24hours of labour and a tug of war with forceps baby Riley Elizabeth was born on 3rd June, Jubilee bank holiday… (Very patriotic but that’s not why we chose the name!) weighing 8lb8oz.

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!