Epilepsy shone at the RCM awards this week

As the previous blog explained we nominated Kim Morley the epilepsy midwife who helped to give us such a positive birth experience with Benji for Emma's Diary Mum's Midwife of the Year.

Well Tuesday was the big day and we went up to London to find out who would win overall.  It was such a lovely day and so great to catch up with Kim again and for her to finally meet Benji.

 

Epilepsy Action's HealthE Mums-to-be campaign was nominated for the Charity Initiative award and I am so happy to say they won.  Two of the lovely people from Epilepsy Action went up to receive the award and Kim and myself joined them as we both worked on the project.  They also won £2000 to put towards future campaigns which I am sure they will put to great use, I would really love to see a campaign around parenting with epilepsy as it holds a lot of challenges but we will see.

 

Then  all the regional Mum's midwife of the year winners went up on stage, it was pretty nerve wracking but Benji was a star and it was so lovely to see Kim receive her award and our way of saying thank you to her.  Then came the moment they announced the overall winner and it was Kim, it was an amazing feeling to see Kim get the recognition she so deserves but also to highlight the need for better care for women with epilepsy.

 

 

We then had to be interviewed which was again quite nerve wracking although I'm sure far more so for Kim.

 

We then also found out that Kim was going to talk on Radio 4s Women's Hour the next day which was a fantastic opportunity.  I think she did an amazing job to fit such a huge topic into a 5 minute interview slot and she spoke so passionately.  If you would like to listen to it you can find the pod cast here.

I really hope that this opens up an opportunity to highlight the need for better care for women with epilepsy during pregnancy across the board, it's about so much more than the risks of the medications, it's all the other factors at play both medical, social and psychological and women just don't get the support they need.  Anyway I will not go on to much about that now as I am planning to write about that for my blog for the epilepsy blog relay on 19th March so watch this space.

But instead I will add some links to stories covering Kims success.


Epilepsy nurse Kim Morley revealed as ‘mums’ midwife of the year’ - Nursing Times

Mums’ Midwife of the Year 2016 — We Meet The Winner - Mum's in the know

Epilepsy Action’s HealthE mum-to-be campaign and epilepsy specialist midwife Kim Morley win big at RCM awards - Epilepsy Action

England's only epilepsy specialist midwife honoured as Midwife of the Year 2016 - Epilepsy Society

 

Epilepsy and Pregnancy makes The Sunday Mail

Taking medication during pregnancy is always worrying but for some of us we have no choice which is why it is so important we have all the facts so we can make informed decisions.

I feel lucky that I was put on the safer drugs that carry the lowest risks in pregnancy and as a concequence it seems I have 2 healthy children.

But Epilim has been found to carry much greater risks both with birth defects and neurodevelopment  problems in children so why has it taken 40 years for this information to come out especially as ot was known when the drug was first licenced.

Now don't get me wrong I don't think Epilim should be band in women as I have friends who nothing else works for who don't want children. I don't think they should have to suffer with seizures and having a family is a person choice it's not what everyone wants so it shouldn't be presumed everyone wants kids.

But what is important isgirls and women are not put on Epilim as a first line drug and also the risk to a baby is made clear and effective contraception is given.

It's crucial women with epilepsy are given all the information and nothing is hidden from them so they can make truly informed decisions. That's why it's so good to see it in the papers - just hope all the truth comes out now about all the drugs.

If you want more information about the drug you are on then you can contact the UK epilepsy pregnancy register. It's also crucial to register with them if you are pregnant to make sure we have the best data on birth defects and how these drugs effect our children. Find out more here:

www.epilepsyandpregnancy.co.uk

34 weeks ~ birth plan's in place

I cannot thank Kim the epilepsy midwife enough for all she has done to get us to this point.  It has been her support which has given us the confidence to stand our ground and push for what we want.  We are now finally at a point where we have a clear plan which is agreed by both the consultant midwife and obstetric consultant at the hospital.

Location

We wanted to be in the birthing unit by due to the size of the rooms we have agreed it would probably be better to be up on the ward but they are going to move the bed and medical equipment to the side of the room and put mats and a birth ball out.  My labour will be managed by the midwife unless anything goes wrong.  I am going to have intermittent monitoring of the baby so I don't have to be strapped to equipment.  No IV - something we have thought long and hard about but due to me never having been in status it seems like an unnecessary intervention.

Pain relief

Mindfulness and moving around using different positions as well as a TENS machine which I found fantastic last time.  Then gas and air as needed. If I need any intervention such as forceps or a c section I will have a spinal instead.

Discharge

We're planning to be discharged reasonably quickly and they have said we can have a private room so that Rich can stay with me, so it's not the end of the world if I have to be in for one night.

It's just been nice to have it acknowledged by both the consultant midwife and the consultant that what happened last time was pretty traumatic for both Rich and me.  The fact they understand that I know my condition the best and are listening to what I want is refreshing and helping me feel more confident and less frightened about this labour.

As far as I am concerned, I am still seizure free and well.  There are no concerns at the moment with more or baby and baby has their head down and seems to be getting into the right position.  So all is looking positive.

Don't get me wrong, I know a lot can change in the next 6 weeks, but all we can do is prepare as best we can and go with things as they happen.

Half way there ~ the ups and downs of epilepsy and pregnancy!

So we had our 20 week scan yesterday and baby is doing really well.  It was actually done by a consultant who while extremely quick seemed very competent so whilst we didn’t get much of a chance to really see baby, I feel like the baby has been checked by the best person possible.

 

The other good thing about this is that it now means we don’t need to see any medical professionals for a while which I am really happy about.  I can now get on with enjoying my pregnancy which is going really well at the moment and the epilepsy midwife I have been in contact with is making me feel really positive about the whole thing.

I have also been convulsive seizure free for 16 months and completely seizure free for 6 months – this is something I really didn’t think possible and while I am very aware that my epilepsy is a type which is difficult to fully control and so may rear its ugly head any minute I just want to enjoy it while it lasts.

But unfortunately we are really struggling to keep my pregnancy non-medicalised and I’m finding it very frustrating.  We had a hospital appointment a couple of weeks ago with the consultant team at the hospital I am giving birth at.  I was meant to see the consultant but because they were running so late I ended up seeing a registrar who knew absolutely nothing about epilepsy.

We clashed over a number of issues... 

Firstly – scans – they wanted to do an extra scan at 34weeks, the epilepsy midwife has told me a detailed scan at 20 weeks by a consultant is enough and I want to stick with that.  They weren’t happy and told me I wasn’t thinking about the baby and then brought up the fact I had refused the Downs Syndrome Test and told me the babies neck was normal thickness which was a good sign –but we didn’t want to know and now you have told us – what if it hadn’t have been normal would they have told us then???

Secondly – an IV – they want me to have an IV in and I don’t want one, their answer to that was – keep seeing the councillor – like she’ll be able to convince me to do what they want!  I don’t want to have it put in so they can put lots of other things through it to cover every possible eventuality.  If there is a medical need during labour then they can put one in then.

Thirdly – discharge – so apparently I’m not going to meet their early discharge criteria even if I have a normal pregnancy and straight forward labour so they will want me to stay in – when I asked why they replied because you are at a high risk of having a seizure after – my argument was that I don’t need to be in hospital if I have a seizure as they have always self-resolved and I will have much more support at home from Rich, family and friends and will be much less stressed at home.  I can self-discharge so although I don’t want to do that I guess it may be the only way to ensure I am in the best place for me and baby.

Fourthly – seeing the consultant team again – I didn’t want to see them again unless anything changes, they want to see me regularly, in the end we decided I would go back at 34 weeks after I had seen my specialist in London.  They told me 4 times ‘you MUST tell us if anything changes with your epilepsy’ making me feel like I was being irresponsible but all I am doing is following the advice from the only epilepsy midwife in the country and I am planning to travel down to Winchester to see her again before this appointment as well just so I feel confident in my decisions. 

But on a positive note I could feel the stress that in the past I know has triggered my focal seizures and I didn't have one - so maybe the Keppra really is helping.

To be honest if I do have a seizure they won’t be the first people I call because they won’t be much help, apparently they can’t even take my Keppra levels so I’ll have to go to London for them anyway, I’ll be calling my team in London first and the epilepsy midwife second then I’ll let the obstetric consultants know.

 

I hate that they are making me feel like I am being irresponsible by not wanting intervention, especially when I am doing what my epilepsy midwife and specialist have suggested.  I am happy to be monitored like any other woman and if they have any concerns at any point I am happy to increase the amount of monitoring and intervention.  But at the moment my epilepsy is the best controlled it has ever been and my pregnancy is going well – why can’t I just enjoy that and feel blessed to be in this position rather than thinking about all the horrible things that could go wrong?

Mindful birthing

Having had such a traumatic experience of labour and being a new mum last time I wanted to find an alternative way to cope this time.  I have been interested in mindfulness and its health benefits for a while now and dabbled a bit in it but never seriously looked into it.  Then last week I was lying in bed worrying about what was going to happen in labour this time when suddenly I realised – perhaps now was the time to take a serious look at mindfulness and I am so glad I did.

I am only on the sixth chapter but already I can relate so much to it.  The idea of going into every situation with a “beginners mind” is particularly helpful, the idea that just because it happened a certain way last time doesn't mean it will happen that way again so concentrate on what is happening right now, experience each moment as it happens, without judgement. 

It may sound a bit silly but because I had to have a really heavy epidural for them to do a forceps delivery last time; it meant I didn't actually feel giving birth and that is just one thing I really feel I missed.  I felt so disconnected from the whole experience that I just didn't really experience any of my labour.  I want that to be different this time.  It may not go to plan but I want to be present in the moment this time round, I think this quote sums it up best:

“Mindfulness doesn't give you the birth experience you want, but it gives you a way to fall in love with the birth experience you get.”

So even though I may have to have an epidural or an IV I want to be more present in the moment and more aware of what is going on in each moment so that I feel in control.

I would definitely recommend Mindful Birthing to any expectant mum and I will keep you updated on how I use it throughout my pregnancy, labour and beyond.

The difference between adequate care and exceptional care

So yesterday we saw the reflections midwife at our local hospital and I have to say I left pretty disappointed.  I think the problem is having seen Kim the epilepsy midwife we had just set our expectations too high.

So I guess I need to start by reflecting on what went wrong last time and that can be broken down into four key parts:

1.  I ended up going into hospital at 9cm dilated – my waters hadn’t broken so there was still the opportunity to put an epidural and after over an hour of trying they finally got it in. I then didn’t deliver for another 12 hours because the epidural mixed with taking clobazam slowed everything down.  When I finally did deliver Riley was dragged out with forceps because we had both become distressed.
2. Rich was forgotten just as things were getting really stressful – he got told to wait in a side room while I was taken off to theatre – he wasn’t told anything.   He didn’t know what was happening to me, he thought I had died.
3. After delivering Riley they forgot to administer pain relief and I was in huge amounts of pain and they then did internal examinations on me.  Of the whole labour for me this was the most traumatic part, I had given birth, it had taken over 24 hours but I didn’t get to hold or even see Riley for what seemed to me to be hours, instead I was in immense pain and having people poke and prod me.
4.  I had to stay in hospital because I was on IV antibiotics and during that time at night when Rich had to leave Riley was placed in the cot with me to feed for hours on end because she wouldn’t stop crying.  The neurology team had dropped my medication levels straight down from 650mg to 450mg overnight (I have since found out I should have been weaned off them) and I hadn’t slept for 3 days – the risk of me having a seizure was high and I was alone in bed with a newborn baby…

So the first thing the reflections midwife did was say she wanted to talk to me on my own – looking back I should have refused from the beginning but she said that was how things worked there and I didn’t want to set off on the wrong foot.

We talked through what happened last time and I kept saying, it was hard for Rich too, highlighting that he had been left not knowing what was going on (similar to what was happening again right now!) and she kept saying she’d talk to him after we’d run through everything.  I also kept saying that I couldn’t really remember the details because of the clobazam making everything a bit muddled up and I definitely couldn’t remember time scales and it would probably be best to check with Rich about the details. 

Towards the end I was close to tears, when I mentioned how hard the first few months were and whereas with Kim it felt OK to cry – this time I felt like I just needed to pull myself together and it was at that point I knew this woman was a means to getting things down in writing so it could be different this time, I wasn’t going to get anything deeper out of it.

When I was finally able to go and get Rich he was understandably upset and there wasn’t really much more to say.  The thing is it’s not that she did anything wrong – the whole way through she agreed that everything that happened shouldn’t have happened and things needed to be different this time around and we agreed we’d write a clear care plan which at the end of the day from a practical point of view is all I needed it’s just we had hoped for a little more.

As my blogs title says I guess it’s just the difference between acceptable healthcare and exceptional healthcare.  In London they’d always included Rich in my care – always looked at the whole picture and Kim well she was beyond amazing – talking to us both, giving us so much time, empowering us together. 

We are lucky to have my consultant and Kim involved in my care and at the end of the day making the biggest decisions – and that’s what I need to hang onto.  If it wasn’t for the appointment we had with Kim I think I would be feeling a lot more worried but as it is I know what I want and I just need to make sure that’s communicated to the local hospital.

Epilepsy Midwife appointment ~ emotional rollercoaster!

I want to post this today as tomorrow we have our appointment with the reflections midwife at our hospital so it seems important that I get this up beforehand.

On our journeys with epilepsy we meet so many professionals all of who have some impact upon the way we view our own condition.  Not all those meetings will be positive and that's why it's so important to reflect on each contact.

In February I was lucky enough to get an appointment with the only specialist epilepsy midwife in the country!  I met here through some of the campaigning I have done with Epilepsy Action.  All I can say is she is amazing - her knowledge is incredible and her calm yet competent approach has given us some of the confidence we so greatly need.  The appointment has changed my expectations of pregnancy and labour and helped me feel empowered to do the best for me and baby.

Here's a brief summary of what we talked about:

Keppra and birth defects

Although it's still early days as far as the statistics for birth defects with Keppra are concerned the numbers are getting to be statistically significant and it's looking like it could be a safer drug than Lamotrigine.  Barely increasing the risk above base line.  Also there is no one birth defect which is showing as being linked to it - another thing which helped put our mind at rest.

Could it have been post traumatic stress?

So a major part of our appointment was reflecting on what happened during labour last time. Rich and me both ended up in tears and it was really hard talking about what happened.  We'd always felt our experience of labour hadn't been great - but hearing it from someone so specialist brought with it mixed feelings - relief that our fears aren't unjustified and hope that things could be different this time around.  Looking back I went through quite a lot and it's not surprising by the time I got home I was exhausted and traumatised.  Those first few months were so tough - I found it so hard to bond - could it have been partly post traumatic stress, hearing that gives me hope things could be better this time round.

Different this time around

I think that is the most important thing I am taking from the appointment - things could be so different this time around - I know now I want things to be as natural as possible.  No IV, no clobazam, no epidural.  As the midwife said I did most of the work at home on my own with a TENS machine last time.  I want as few hospital appointments as possible - I'm not going to be stupid about it but at the same time I don't want my pregnancy to become medical.  I want to go home as soon after having Riley as possible and if not I want Rich there with me.  All this is supported by the midwife and she's going to write it all down so I really feel like this could happen.

Monitoring drug levels

I have also learnt that there is mixed research behind monitoring medication blood levels.  That's not to say it's not worth it but they are not sure whether just because Keppra levels drop in the blood stream they necessarily drop in the brain - so if I don't have any big seizures why put my med dose up?  It's good to know if they are dropping especially if they go out of therapeutic range completely but has definitely opened up my mind to the pros and cons of it.

So all I can say is I left that appointment feeling empowered - like I do have a choice.  Things may well change, I might start having more seizures or something completely non-epilepsy related might go wrong but at least I know that it might be possible to have a natural labour and that for me is a good base line to work to.

Thank you to this amazing lady for helping turn this experience around for me - I went into the appointment so frightened and came out feeling empowered with a plan.

Riley’s proud to announce she’s going to be a big sister!

Yes, that’s right, and that’s the reason for rather a lack of posting in recent months on here.  I am now 13 weeks and 2 days pregnant, which makes the baby due on 5^th October 2015.  Yesterday we had our first scan and I am so relieved that everything is looking good so far and it really makes the whole thing seem more real.

Sitting in the waiting room I had that same mix of excitement that we finally get to meet the baby and also fear that something could be wrong with the baby but all is ok and it is just so amazing to see baby on the screen.

So the first 13 weeks… well I knew I was pregnant literally a few days after I conceived – I felt sick and so tired, at least I hoped I was pregnant.  I had put my Keppra up after having a few focal seizures in November and so the alternative was that it was a side effect of the medication in which case we’d be looking at alternatives at the next appointment because I couldn’t live like that!

The next 2 weeks before I could actually do a pregnancy test dragged by but when those words came up on the test I was so relieved and excited.  Last pregnancy I had had a seizure by that point so things were going well.  I felt awful and was being sick regularly.

In my next blog I am going to talk about the appointment I had with the epilepsy midwife just after I found out I was definitely pregnant.  I can tell you it was a turning point for me – it made me realise what happened during my last pregnancy and labour didn’t have to happen this time – this time things could be different and that although I knew it would take some fighting for I wanted this pregnancy and labour to be more natural.

So I have now also had my booking appointment which went really well.  It was with a student midwife (overseen by a senior midwife) but she really seemed to understand how I felt, that I felt anxious about what happened last time and wanted things to be less medical this time.  They felt things hadn’t gone as well as they could and we are now seeing the birth reflections midwife next week so I will talk more about that after we have had our appointment with her.

They seemed to support me in having as few appointments as possible.  As I am under consultant lead care I will need to see the obstetrician once but they are going to make sure it is the consultant and not a registrar and then as long as everything continues to go well I can just see the community midwife at my GP like any other women would.

I don’t like to tempt fate but I have been a year free of convulsive seizures.  Now that can happen for me, I have been over two years before without one and then had one for no reason but it’s got to be a good thing.  I have actually been completely seizure free since November – I’m not expecting that to last but somehow I feel Keppra is working better than the Lamotrigine was… it’s early days and we’ll just have to see how things go.  I have learnt a long time ago not to get my hopes up too much – but I am going to be quietly confident – otherwise what’s the point?

So anyway the sickness is now easing and I can finally eat again which in turn is giving me more energy and I feel like I can get back to life again and all it brings which includes this blog.  So watch this space as I’m going to be blogging about becoming a mum again as well as being a mum already so there’s going to be lots to talk about :) exciting times!

Would you like to share your pregnancy story and your experiences of being a parent with epilepsy?

Epilepsy Action is building on the Pregnancy Diaries which Riley and me were involved in.  They’d love to hear from new people.

It was an amazing project for me to be involved in.  Nicole who put the whole thing together is so approachable and it really helped me to feel that I was helping making a difference to other women.  I felt very alone during my pregnancy and I didn’t want anyone else to feel like that if I could help it.

You can read the pregnancy diaries here.

So now it’s your chance to get involved.  Drop Nicole an email to find out more campaigns@epilepsy.org.uk

And watch this space, I’ll keep everyone updated as the project moves forward in 2015.

We're on Neuro Nula

Neuro Nula is a website, currently underdevelopment (I think possibly nearly finished...) but which when it's finished aims to share stories and connect through a forum people affected by neurological conditions.  It looks like it's going to be fab (click below to see more).

Anyway, we have shared our story and it's been on social media a bit which is pretty exciting :)

Promotion of public information and awareness award

I feel very proud to have won an award for the work I have done to help promote, well, in the words of this blog... becoming a mum with epilepsy! 

Epilepsy Action Volunteering Awards 2014: Promotion of public information and awareness category - Clair Cobbold

Clair has uncontrolled epilepsy. In June 2012 she gave birth to her first baby, daughter Riley. Thankfully for Epilepsy Action, Clair kept a diary throughout her pregnancy. This diary resulted in Clair becoming the first of our Pregnancy Diary writers of 2012, sharing her personal experiences of her pregnancy and parenthood journey. http://www.epilepsy.org.uk/node/62142

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality.

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience.

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality. 

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience. 

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.

The Pregnancy Diaries was recently Highly Commended at the BMA Patient Information Awards and Clair played a big part in ensuring our resource was of such a high quality. 

Clair, together with Riley, became the main ‘poster girl’ of our HealthE mum-to-be campaign. She also completed several media interviews, including local radio and newspapers and appeared in a double-page article in national magazine Prima Baby. Clair is ever willing to help, and happily agreed to be the face of The Guardian’s Mediaplanet supplement in National Epilepsy Week, being interviewed for the supplement and featuring on the front cover.

Clair is an amazing advocate of Epilepsy Action and regularly promotes our work and website on her own blog. She is very open about her own experiences and difficulties. The women we are trying to reach with our women’s campaigns have really warmed to her.

Clair hosted a workshop for parents with epilepsy at the London Weekend for all in November 2013, and spoke in the main hall for the event. She did a great job, not only raising awareness to help other mums and mums-to-be with epilepsy, but inspiring the audience. 

Clair is a fantastic ambassador for the HealthE mum-to-be campaign. We simply couldn’t have run such a successful campaign without her support.

Neuro Nula - my story

I've been writing my story for a website called Neuro Nula and it's made me reflect on my experience of epilepsy so I thought I'd share it to reflect on why I started this blog:

I’m Clair, I'm 29 and this is my story…

I was diagnosed with epilepsy when I was 19 after having a couple of tonic-clonic seizures.  Looking back now I think I’ve had focal seizures most of my life.  I get a funny wave feeling of fear that washes over me and then my vision alters, it lasts a couple of seconds and my consciousness doesn’t really alter.  But these were only diagnosed as seizures a couple of years ago.

My epilepsy has never been severe, for that I feel blessed.  In the beginning before I started medication I had one tonic-clonic a month but soon after starting Lamotrigine I was free of major seizures for over a year.  But it’s never completely gone away, I’ll go a year, sometimes two without a tonic-clonic seizure and then for no apparent reason I’ll have another one.  I have the odd focal seizure every now and again.  I don’t get a warning before my tonic-clonic seizures and so have hurt myself a few times, I guess it means it’s always in the back of my mind – what if I have a seizure right now...

I think it helps that I have such wonderful family and friends; I can never thank my Mum and husband Rich enough for all they do to support me, from picking up the pieces after a seizure to the everyday things like giving me lifts places.  I don’t know what I’d do without them.

I think I’ve accepted my epilepsy, I know it’s something I’ll probably have to live with for the rest of my life.  I’ve also never wanted epilepsy to stop me from living my life and doing all the things I want to do and I think I’ve succeeded with that.  I went to university, got married, ride my horse and ski.  I am pretty independent, I know the local trains and buses like the back of my hand and it may take me a while but I can get anywhere on public transport!

I’ve tried to see the positive in my epilepsy, it’s a way I can help other people.  I started volunteering for Epilepsy Action, giving epilepsy awareness presentations, not long after I was diagnosed and I was interviewed for the Youth Health Talk website.  I’ve always believed talking about my epilepsy will help the big picture, reduce the stigma.  When you start talking about it people are interested and want to ask questions, I find being open about my epilepsy is one of the best ways of spreading awareness.

What I really want to share with you is my experience of becoming a mum.  It is one of the most amazing things that I have done in my life.  I know some women who have decided against starting a family because of their epilepsy and I wanted to do something to help women feel more confident and supported in having a baby.  It just happened that not long after my pregnancy, Epilepsy Action started their Healthe Mums-to-be campaign which I got involved in.

I kept a blog during my pregnancy and that has grown into a Mum’s blog which I hope other women with epilepsy find useful.  If you want to read more about my story you can find my blog at www.becomingamumwithepilepsy.blogspot.co.uk.

I found out I was pregnant about a week after having a tonic-clonic seizure.  I was over the moon but terrified at the same time.  What could my seizure have done to the baby, has the baby been affected by my epilepsy medication… being pregnant and having epilepsy is pretty daunting.  At my 12 month scan I remember being so scared, but when I saw our baby and being told everything looked fine and was completely ‘average’ I was so relieved and excited, it made it all seem so real.

My pregnancy after that went quite smoothly, I was very lucky, I was already being seen by an epilepsy specialist in London who was fantastic.  I had 2 epilepsy nurses I could call anytime and my local hospital where I was having the baby was really supported.  I had a lot of extra appointments and checks, I felt really looked after.  Probably the best thing was that my friend (we’d been friends since nursery school) happened to be a student midwife at the hospital; she asked if she could use me as a case study.  It couldn’t have worked out better; she came to all my appointments and made sure all my notes were in place.  But I did feel very alone, like I was the only one going through it, I didn’t know anyone else with epilepsy who’d had a baby, that’s why I started my blog to make sure other women knew they weren’t alone.

There are lots of things to consider when starting a family if you have epilepsy, but they are no reason not to have a baby, it just needs a bit more thought and planning.  It is always best to try to plan your pregnancy, talk to your doctor about your medication, especially if you are taking sodium valproate which has been shown to have a much higher risk of birth defects as well as childhood developmental problems.  It’s important to have a plan for labour and you can discuss this with your specialist and to know that most women can breastfeed while taking epilepsy medication (although often they are told they can’t).  Most women who have epilepsy have normal pregnancies and labours and have beautiful healthy babies.

You can find lots more information in the Epilepsy Action HealthE mum-to-be campaign: https://www.epilepsy.org.uk/pressreleases/national/new-campaign-provides-support-pregnant-women-epilepsy or on my blog.

From an epilepsy point of view my labour went to plan, it did have other complications, but Riley Elizabeth was born at 6pm on Jubilee Sunday weighing 8lb8oz and perfectly healthy.

Becoming a mum is both a wonderful moment but also takes a lot of adjustment for anyone let alone if you have epilepsy.  I always say to women that if they don’t feel that unbreakable bond as soon as they see their baby it is completely normal, I found it took time to build the bond, but I know that when Riley smiled for the first time I would do absolutely anything for her.

Looking after a baby when you have epilepsy is also pretty daunting.  But the most important thing to remember is you are a mum with epilepsy not the other way round.  I always carried Riley up the stairs in her car seat, I had a dead break put on my buggy, and I didn’t bath her on my own – practical things to keep her safe.  But I didn’t let it stop me being a mum.  One of the other challenges is not being able to drive, getting the bus with a newborn baby is pretty scary, my family and friends helped by giving me lifts to start with but I soon got the hang of getting buses and trains, and I lost all my baby weight with the exercise.  I think one of the most important things was getting out and about and spending time with other people, not getting isolated.  I have made some wonderful friends through being a mum, no-one judges me because I my epilepsy.

As Riley is growing up and exploring the world it is amazing to watch her and I love her so much. There are going to be challenges to face in the future, some regarding my epilepsy and some not.  But right now I am enjoying being a mummy.  I don’t know what the future will hold for us, but all I know is I am very lucky to have a wonderful husband and beautiful, healthy little girl.

www.neuronula.co.uk

Neuro Nula aims to bring people living, or caring for someone, with a neurological condition together to share their experiences, advice and make new friends in a place free from judgement and stigmatisation.

Neuro Nula will provide a safe, moderated forum, links to neurological organisations and access to the stories of people affected by a range of neurological conditions. If you would like to share your story, contact NeuroNula@live.com 

Levetiracetam taken in Pregnancy Found Safe in Preschool Child Development

A new study finds that the epilepsy drug levetiracetam appears not to be associated with thinking, movement and language problems for preschool children born to mothers who took the drug during pregnancy, although the drug valproate was associated with some difficulties in preschoolers. The study is published in the January 8, 2013, online issue of Neurology®, the medical journal of the American Academy of Neurology.

"These results are heartening, as the use of levetiracetam has increased in recent years, but there has been limited information on its effect on the thinking, movement and language abilities of children. However this is the first study to look at the effects of levetiracetam and further research is needed before we can be certain there are no associations. It is very important that women do not stop taking their medication before speaking to their healthcare professional," said study author Rebekah Shallcross, PhD, of the University of Liverpool in the United Kingdom.

The study involved 53 children exposed to levetiracetam, 44 children whose mothers took valproate and 151 children whose mothers did not have epilepsy and did not take any drugs during pregnancy. The children were age three to four-and-a-half. Tests evaluated their development in areas such as thinking, movement and language abilities.

The study found that children exposed to levetiracetam did not differ from children not exposed to epilepsy drugs on any scale administered. Children who were exposed to valproate, however, scored an average of 16 points lower on movement tests, 10 points lower on expressive language tests and six points lower on language comprehension measures than those exposed to levetiracetam.

In a corresponding editorial, Pavel Klein, MB, BChir, of the Mid-Atlantic Epilepsy and Sleep Center in Bethesda, Md., said, "Importantly, valproate is used more commonly for treatment of neuropsychiatric diseases such as bipolar affective disorder or migraines, than for epilepsy. In 2005 to 2007, only 19 percent of the 926,000 valproate prescriptions given to women in the U.S. between the ages of 15 and 44 years were for seizures. There is virtually no information about the drug's effect on babies born to mothers taking the drug for these disorders." Klein noted that valproate doses used in these disorders are usually lower than for epilepsy.

A fantastic step in the right direction!

I got a phone call a couple of days ago from my GP surgery.  They were looking through all the notes of people with epilepsy at the surgery... which included me.

They asked me when my last seizure was and then went onto ask if I knew the risks of anti-epileptic meds in pregnancy... how fantastic is that! Having my GP contact me to ask me about it is a huge step to making sure women with epilepsy are given the right information.

I don't know whether it had anything to do with the campaign, I'd like to think it did but either way it can only be a positive step and hopefully it's not just my GP that is helping to make sure women with epilepsy feel supported in starting a family.

Calling all Dad's with Epilepsy

I was contacted  by a family who the father had epilepsy and wanted advice.  It was something which I had been thinking about for a while.  I have made this blog and network focus on women and while women have the added worry of the medication and seizures impacting on the baby.

But one of the biggest worries I had was actually looking after Riley and I know how much Rich is involved in Riley's life, if he had epilepsy that would be a huge worry for him and me.  I suppose it turned things around for me.  This needs to not only focus on women but also men who have epilepsy and are thinking of or already have started a family.

And also maybe more than that, maybe I didn't consider enough what an impact it has on Rich, of his worries and so this whole thing needs to look beyond just women.

So I guess the people I hope my story will help has grown, I want to reach women and men considering starting a family in the future, pregnant women and mothers and fathers with epilepsy and their partners... it has opened my mind to the fact that the issues of epilepsy and pregnancy are far bigger than I first considered!

London Epilepsy Weekend for All ~ 1st - 3rd November 2013

In a couple of weekends time it's the London Epilepsy Weekend for All and it looks fantastic.  It's a weekend full of presentations and workshops by professionals and people with epilepsy.  It will give people a chance to ask lots of questions and meet people in a relaxed environment.

It's for the whole weekend, people can go to one of both days, stay there overnight and even arive on the Friday and stay all weekend.

There's going to be information sessions on both days for women thinking about starting a family, pregnant women or new mum's.  There will be more on the Saturday as their will be a specialist epilepsy midwife there and a consultant, but I'm going to be there both days to share my experiences and answer question if I can.  There will be lots and lots of other useful information sessions but from a pregnancy and parenting point of view this is what is happening:

Saturday

11.30am to 12.10pm Kim Morley – Epilepsy specialist midwife.  Speaking on pregnancy planning, care and delivery; caring for your baby.
12.15pm to 12.30pm Clair Cobbold.  Epilepsy and motherhood – a personal perspective.
12.35pm to 1pm Dr Cock; Kim Morley and Clair Cobbold - question and answer session on epilepsy pregnancy and motherhood / fatherhood.
2pm - 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Kim Morley ESN and midwife and Clair Cobbold Epilepsy Action volunteer and a mother with epilepsy featured in the Pregnancy diaries.

Sunday

2pm to 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Shelley Brett Epilepsy Specialist Nurse and Clair Cobbold volunteer with Epilepsy Action and a mother with epilepsy featured in the award winning Pregnancy diaries.

Looks like a really great weekend for anyone interested in epilepsy.  I'm hoping it will be a chance to get lots of mum's and mum's to be with epilepsy together to spreead support and maybe start some sort of support network.  Hopefully see you there.  Click below to book your place:

https://www.epilepsy.org.uk/involved/information/weekend-for-all

Warrior Mum's ~ My story

My story is the feature of Michelle Daly's Warrior Mums blog today :) hoping that it's another way of my story helping more women with epilepsy.  There have been some wonderful comments, I don't feel like I've really done much, just told my story.  It's not a story full of drama but just about being a mum and overcoming the challenges epilepsy has thrown at me along the way... but if my story can even help just one other person then this is all worth doing :)

Have a look at Michelle's fantastic blog:

http://michelledaly.blogspot.co.uk/

Also keep an eye on the new page "other mums' experiences" I've added to my blog, there are some fantastic mum's writing for it as we speak.  If you'd like to share your experience, e-mail me:

claircaxton@hotmail.com

Epilepsy Research Findings

 These are the findings of the piece of research I was interviewed for quite a while ago...

 ‘Gaining an Understanding of the Experience of Pregnancy in Women with Epilepsy'

 

Sincerest thanks to all of you who participated in this research. It was a privilege to hear your experiences and from my analysis of your accounts I have generated four themes:
 

Concerns about Motherhood 


* You expressed having concerns during your pregnancies about how their epilepsy and/ or its treatment would affect your ability to be a mother. These concerns related to fears of harming the baby through seizures and/or medication.
* Despite these concerns, many of you also expressed your joy at becoming a mother and did not feel different for having epilepsy.
* Many of you had been advised about what you should avoid doing after the baby was born, (e.g. not bathing the baby alone). Some of you struggled with this, and related the ability to do certain tasks with what it is to be a mother.
* Some of you discussed your concerns they had about how your epilepsy would impact on labour and birth- some felt that a seizure would stop you from consciously experiencing your own birth or being able to give birth naturally.


Experience of Services 


* For some of you, the experience of being pregnant and having epilepsy meant that some professionals who were not involved in the care of your epilepsy either overly focussed upon epilepsy or did not want to engage in any conversations about epilepsy.
* You also described positive experiences of services when they took into account your needs and wishes. Negative experiences tended to be when fewer choices were available and when decisions about care were made without your input.


Living with Risk 

* For many of you taking medication during pregnancy, the risks associated with medication were thought about by weighing them up against the risks posed by uncontrolled seizures.
* For some of you the experience of being pregnant had created changes in how you thought about your epilepsy. Many of you described being ‘more wary of it now’ but also described ‘carrying on’ with life as usual.

Accessing Information 

* It was felt that there was a lack of understanding amongst healthcare professionals about epilepsy and the issues raised with pregnancy. Many of you described having to take the lead on their own care needing to chase things up yourselves. Many of you also felt that you did not feel particularly informed about pregnancy and epilepsy and that information was hard to come by.

Conclusions 

* Like many pregnant women, pregnant women with epilepsy can face a number of challenges during their pregnancy. However, these challenges were exacerbated in this group of women and many of these women also faced a number of additional challenges during their pregnancy.
* Women described their anxieties about being harming the baby, either through a seizure or through use of antiepileptic drugs.
* Women often found themselves to be the messenger between different professionals and many women felt that most health professionals had a very limited understanding of epilepsy.
* Information about what to expect during pregnancy was not always widely available.
Implications
* Risk of harming the baby is a significant concern for many women with epilepsy during pregnancy and therefore health professionals should help women to understand these risks in a supportive manner.
* Health professionals should recognise the emotional impact of managing a pregnancy alongside epilepsy and women should be given the opportunity to talk about their feelings throughout their pregnancies.
* Health care professionals should have more training about epilepsy and so that they are able to have a greater understanding of the needs of the women that they see and provide more useful and accurate information.
* Any advice offered to women with epilepsy during pregnancy should be individually tailored.
* Women need more information about the challenges of pregnancy and epilepsy. Epilepsy nurses well place for providing some of this information to be shared with women.

Sharing the Findings

I am presenting these findings at a conference which will be attended by Midwives, Health visitors and other health care professionals. I am also intending to publish the findings as a research paper and will be sharing the findings with the Epilepsy Nurses in York and with Midwifery Services in Humber. I also intend to provide a summary of the findings to Epilepsy Action.

Once again, thank you very much for participating in this research. Your time and contributions were valued immensely.

Best wishes,
Stephanie Boardman.