Medication in pregnancy ~ does the guilt ever go?

When you are pregnant you want to do everything you can to protect your unborn baby.  You watch what you eat and drink, giving up things you loved before just in case it impacts on the life you are growing inside you.  But for those of us who have no choice but to take medication during pregnancy it is a huge weight on our mind throughout those 9 months and beyond.

Pregnancy and the early days

That first scan is so scary, but then so is every scan after that, what if they find something, what if the drugs have affected the baby, I think it’s the only time in life where you want your child to be completely average and I felt blessed that both mine were.

Then they are born and the relief that both my babies we’re ok was huge.  The first few days with Benji were a worry, he didn’t poo straight away and the doctor was questioning whether his digestive tract had developed correctly.  We heard her making irate phone calls to the consultant and the whole time I was sat there thinking maybe this is because I took Keppra in pregnancy.  It turns out he is fine but the worry at the time was very real.

So once they are home I though the guilt would pass, we have two healthy children we could get on with life.

Small problems start to show

But then we noticed Riley’s eyes would sometimes roll outwards, to begin with I thought I was imagining it but by the time she was two others started to notice it too. It turns out she has a divergent squint, she controls it really well and I am so proud of how grown up she is when she goes to the hospital and has her eyes tested.  But in the back of my mind I question why does she have this problem, could it be the lamotrigine I took in pregnancy?  She may need surgery in the future, it’s not a problem that is likely to go away and I worry that other children will notice her eyes and bully her for it.

Then there are her little toes, they are slightly deformed, they are slightly high on her foot and the nails are small and impossible to cut. I have mentioned it to the doctor and we were told they may well bother her when she gets older and require a small surgery to correct them.  But a few weeks ago Riley asked me why her toes are funny, it was because Benji’s are normal so when I cut their nails together I can do his really quickly but with hers I have to get clippers out and try to pull the nail back to cut them and it hurts her.  She asked why her nails were so hard to cut when Benji’s toes were so much smaller and yet his nails were easy to cut…

Finally there is potty training, this has been a complete nightmare, the hardest part of parenting so far for us… we have tried everything.  We have used so many different reward charts, we have got her to clean up the mess, we have used a wobble watch to remind her to use the toilet, we have given her big drinks to try to stretch her bladder and still we have regular accidents.

Don’t get me wrong things are improving, we definitely have less accidents now than 18 months ago but we struggle to go more than 2-3 days without an accident and some days we will have loads.  The health visitors are all out of ideas, nursery are all out of ideas and for a child so bright and articulate it seems strange she can’t grasp a simple concept of using the toilet.

At first it was really hard seeing all her friends just getting it.   But it has gone on for so long now I have learnt to accept it but it is still hard when there are children so much younger than Riley who are successfully potty trained.

There is also so little support out there when you are struggling.  I had to break down in floods of tears to the health visitor to even see them.  We had a scan done and it showed her kidneys are normal but it would appear her bladder is small.  We don’t know why yet but we have finally got a referral to the paediatric urologist, it has taken a long time and a lot of heart ache to get there.  And now I wonder could it be the medication I took in pregnancy which is behind this problem.

Could it be the medication?

The truth is we will probably never know whether these problems are caused by the lamotrigine because while data is collected on major birth defects at birth, small problems like this are not recorded anywhere and without the large data sets you can never tell whether it’s just unlucky that she has these problems or whether it’s due to the drugs.

Of course these little problems wouldn’t have stopped me having a baby because I was taking epilepsy drugs, I wouldn’t change Riley for the world.  I suppose it’s more the guilt that is linked with them, I blame myself for Riley’s problems.  Because no one can tell me either way whether it’s the drugs I blame myself for the decisions I made, like to up my lamotrigine dose during pregnancy because my levels dropped.

It’s also a funny situation because I feel like because Riley and Benji were exposed to different drugs during my pregnancy and Benji doesn’t seem to have these problems that if I had taken the plunge and tried Keppra sooner Riley might not have these problems.  I chose not to try Keppra sooner because I was worried about it effecting my mood because of all the things I had read about it so I feel guilty for that.

What needs to change?

I suppose what I am trying to say is that more needs to be done to record the long term effects of medication on children exposed to it in uterus. Drug companies need to take more responsibility for their medications so women can have all the facts available to them.  I wouldn’t have chosen not to have children because of these small problems but now I feel guilty for every problem my children have, it would be good to know which are linked to the medications and which aren’t and just to receive better support and understanding from health professionals.

There is so much information on the risks of smoking and alcohol in pregnancy and at the end of the day there is no need for women to smoke and drink in pregnancy (and the risks seem pretty obvious) yet there is so much data on the risks.  But for medications that many women have no choice but to risk in pregnancy the data just isn’t being collected and that seems wrong somehow.

Update on life!

I haven’t written anything for a while and yet so much has been happening, and I guess that is the point of this blog.  It’s been a very busy few weeks, I have returned to work, Benji has started nursery and we finally got a referral to the paediatric urologist for Riley. Meanwhile I have been continuing the running training for the marathon next year and feeling the pressure of needing to begin to fundraise.
I would love to say that I have coped with all this fantastically well, and I hope that to the outside world it seems I have, but on the inside I have been really struggling and at one point was right on the edge so here’s the honest truth condensed down to one blog.

Benji’s growing independence

Benji is a star, so laid back, so easy and I feel totally blessed to have him.  He has started at nursery which I have to say I was really nervous about as it took Riley so long to settle and while I can’t say he loves it, I feel like he has accepted it and so I don’t feel too guilty.  He has also just started to crawl and is into everything! 

Yesterday I noticed four new teeth seem to have sprouted from nowhere and he hasn’t really made a fuss.  We’ve had the starting nursery sickness to contend with as well, lots of new bugs so last week he had a temperature and last night I was clearing up sick!  But all in all he is doing really well and growing up so fast!

Riley on the road to school

Riley starts school in a matter of weeks, she is excited and can’t wait.  She has grown up so much and while she has the odd difficult moment she is a joy to spend time with, she cares so much about others and is funny and her character is really starting to shine through.  That’s why the next blog I am going to write is going to be a tough one to write, there are a few little things which she has to deal with that I just wonder, ‘are they linked to the lamotrigine I took in pregnancy?’ but that is a long story and will be the basis of my next blog.

Work and run

So my seizures remain controlled with the Keppra which to me is a miracle, no focal seizures for coming 20 months, no tonic-clonics for 28 months! I have my driving licence back, my confidence is growing with the kids and I feel great.  I am now back at work, at a desk all day, and I find that quite hard but it has to be done.  I am also doing great on my marathon training, now running 5k well within 30 minutes 2 times a week with longer runs as well, so I am now up to running 15k.  With my first half marathon in 5 weeks’ time I feel like I have achieved a lot in the last few months and overcome a massive hurdle.

Anxiety attacks

So all this change has come at a cost, Keppra has been the drug to control my seizures, I feel so blessed for that, but it hasn’t been plain sailing that’s for sure. I can’t say whether it is the Keppra itself or the fact that for 10 years I was on lamotrigine, a mood stabiliser and maybe I just got used to that but lets face it all these drugs change the way our brains work, they control the activity going on in there. 

There is no getting away from the fact that since I made the change from Lamotrigine to Keppra I have had to work a lot harder at finding strategies to regulate my mood.  When times get tough like that have in the past few weeks I start to feel myself falling apart.

So I know that I have been more snappy towards Rich and I am so glad that he puts up with me, I can’t thank him enough for all the support he give me.  I have found that running really helps me to regulate my mood, it gives me some me time away from the kids and allows me to reset.  But the biggest challenge over the last month has been my anxiety. 

I started waking in the night having anxiety attacks, with my heart racing and pounding in my head.  I used to get this when I was first diagnosed with epilepsy and all I can say is it makes going to bed really scary.  So after three nights of this happening I started to feel the anxiety growing in the day, then one day I thought it was going to happen while I was out at the park dealing with the kids, I panicked and started to leave the situation and luckily calmed down. 

But that episode made me realise everything had got too much for me and I needed a coping strategy.  So cue mindfulness, I had let meditation slip over the last few months.  As things get busy finding the time to actually meditate seems to fall to the bottom of the pile.  But after these anxiety attacks I started prioritising it before bed, and wow I can’t explain how quickly I felt more in control. 

Since starting 30 minutes of meditation each day I haven’t had any more anxiety attacks, day or night and just feel able to cope again.  I have also found a great running meditation which kills two birds with one stone! Yes it another thing which takes up my time, but it really does improve my quality of life.

It's National Epilepsy Week ~ let's get talking about epilepsy

So this week is National Epilepsy Week and a survey by Epilepsy Action shows many people with epilepsy still fear discrimination and are worried about talking about their epilepsy.

So I was thinking wouldn't it be great if we could use this week to start turning that around. How? By sharing our own stories of epilepsy, showing people that yes Epilepsy can be scary and unpredictable but we all battle through it and come out stronger and more reliable people, better partners, children, parents, friends and employees because we have been through hell and just got on with it, it may not feel like that on the hard days but we are all amazing epilepsy warriors.

So here goes, my story, I would love it if others shared there own stories in the comments, doesn't have to be pregnancy related just show the world we are stronger than epilepsy.

I was diagnosed with epilepsy 12 years ago aged just 19 and around the time I stated university. When I was first diagnosed I was lost, scared and I felt my whole life hinged on becoming seizure free, like everything was put on hold waiting for that to happen. Seizures were so unpredictable, with no warnings and knocking me out for days, how could I function like that?

There were a few periods where it looked like it would happen, months with no tonic clonic seizures and then bam a seizure would happen out of the blue. It was like it was teasing me. There have been some dark days where epilepsy definitely pushed ahead in the battle.

Eventually after 6 years of these intermittent tonic clonic seizures I found the strength to challenge my neurologist about why it wasn't going away. His response of well that's just how it is  wasn't enough for me so I pushed to see an epilepsy nurse and got refered to London.

Finally I saw a doctor who really listened to me. She did more tests and re diagnosed me with temperal lobe epilepsy and said she felt I was having focal seizures. Suddenly a reality hit... I hadn't been seizure free for months ever, these little focal seizures had been there the whole time I just didn't really link the two.

With a proper diagnosis I started talking to other people with the same type of epilepsy and other professionals and it became clear that while the seizure frequency tends to be relatively low seizure freedom can be hard to get especially after so much time. I then I started to realise I couldn't continue to put my life on hold waiting for seizure freedom. I needed to start living life with seizures.

So I started looking for ways to cope with the anxiety I felt from the unpredictability of seizures. I enrolled on the expert patient programme and looked into mindfulness, both helped me come up with strategies to manage my anxiety.

Then I started to live life, finding a job my epilepsy didn't effect so I could give it my all, having two amazing children, riding my horse, skiing in America and getting out running again. I didn't let epilepsy win.

So 12 years after my diagnosis I am in fact 18 months completely seizure free... it is a miracle and yet not a miracle I needed to live life. People say you must be so pleased, and I smile and say yes I am. But am I pleased? Of course I am happy but I had already accepted a life with seizures in order to make sure I didn't miss out on living life so being seizure free I don't like to think about too much because if I do have a seizure again I don't want to feel the incredible disappointment I have so many times before - I don't want to miss out on life because of it.

I guess what I am trying to say is don't let epilepsy win. Have hope things will improve but also find a way to live in the worst times otherwise we miss out on so much.

Sending lots of love to all my fellow epilepsy warriors and their families and friends who stand by them, hope to read your story soon xxx

Purple Day 2016 ~ Epilepsy fighters

Today is purple day and a great chance to raise some awareness about epilepsy and what living with it really means.

Epilepsy is so much more than just seizures and it's impact is not just on the person with epilepsy but everyone who loves that person to.

It's the unpredictability of it, yes seizures are awful, they knock you back and make you feel awful for hours and even days.

But it's the fact you never know when a seizure might happen that means you are always on edge, constantly risk assessing.

The longer you go without a seizure the more your confidence grows but then if epilepsy does hit again it knocks all that back.

So many times I have thought I had won only to be knocked back again by epilepsy. But epilepsy will never win I won't let it stop me living my life, having the family I want, riding my horse, skiing.

This purple day I am seizure free for 16 months and driving again. I have 2 beautiful children and feel confident again I hope epilepsy doesn't steal that confidence but you know what if it does I will fight back again.

Happy Purple Day to all those fighting epilepsy and all those supporting us in that fight.

Share your stories proudly and build awareness.

Care in a perfect world ~ Epilepsy Blog Relay

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

I 've been thinking long and hard about what to write about for the blog relay and I've decided following on from the Royal College of Midwives awards last week I'm going to look at how care of women with epilepsy especially through pregnancy and early motherhood needs to improve.

 

Becoming a mother is a huge decision for anyone, it's a daunting prospect the idea of bringing a tiny person whose completely reliant on you into the world and helping them to become a valued member of society.

 

Then add epilepsy to the mix which brings with it so many additional complications, the risks that come with the epilepsy medication, the fact no matter how well controlled your seizures are you are labelled high risk and the fact you are going to be looking after someone so vulnerable while also suffering a condition which is so unpredictable. It's a scary thing.

 

So you'd think that with so many issues to think about there would be good support systems for women with epilepsy but unfortunately often there is very little support.  Most women are being looked after by a general neurologist who probably doesn't even specialise in epilepsy and who won't be able to see them in months. There are areas of the country where there aren't epilepsy nurses and with only one epilepsy midwife in the whole of England paid for just 6.5 hours a week who can women with epilepsy talk to about starting a family? 

 

It leaves women with epilepsy pretty alone in this scary situation and so they turn to google and online forums, which are a great resource to share experiences but one which should be backed up with real life knowledgeable support. 

 

It's little wonder I speak to women and they are really frightened to start a family, they are being told about the risks of their drugs on babies with little support in all the other issues epilepsy places on pregnancy. We need better support for women or we're going to be going back to a time where women with epilepsy feel they can't have a family due to their condition which is not the case.

 

Risks of medication

 

At the moment there is quite a lot of media out there about the risks of  epilepsy medication in pregnancy and rightly so. Women should be given ALL the facts and the fact so many women were not told about the risks of their drugs and the impact they could have on their unborn child is disgusting.

 

But I fear things maybe going too far the other way, without the right support this information is extremely frightening for women.  I have spoken to women on some of the safer medications who are terrified and considering not having a family because of the risk and you ask them who they have spoken to about it and it's no one. They have read the risks online and have tried to see their neurologist but have to wait months for an appointment.

 

Please don't get me wrong women should be given the facts about there medication and the impact on an unborn baby but they should also be able to talk their worries through with someone so they can weigh up the joys of childhood with the risks of the medication and ways to reduce the risks.

You can find out more about the risks of epilepsy medications here.

 

The pitfalls of being labelled 'high risk'

 

Having epilepsy automatically makes you a 'high risk' pregnancy whether you are having convulsive seizures daily or have been fully controlled for years.  But what does 'high risk' mean? Well it seems to vary greatly from area to area. Some people have great joined up care between their epilepsy team and obstetric team, unfortunately I think usually this doesn't happen. 

 

It certainly didn't for me in my first pregnancy. I was stuck in the high risk clinic seeing an obstetric registrar whose knowledge of epilepsy was limited.  I went along with everything they said with very limited birth choices and it lead to a fairly traumatic birth experience.

 

When it came to my second pregnancy I really had to fight to get birth choices as I wanted things to be different, I wanted a natural birth with minimal intervention.  My epilepsy was well controlled and yet because I was considered high risk I had to fight to have any choice in my birth, luckily I had an epilepsy midwife backing me up. 

 

I was told I couldn't be in the birth unit because I was 'high risk' even though my pregnancy had been completely straight forward, my epilepsy had been completely controlled and the birth unit was in the same building as the main ward.  For me stress and anxiety trigger my seizures so being in a more homely environment would have been beneficial for me but it was a definite no.  Instead I chose to stay at home as long as possible and arrived at the hospital fully dilated ready to push.  Benji arrived 42 minutes after arriving at the hospital.  It was an amazing birth experience because I was in control the whole time.

 

I feel women with epilepsy need to be treated as individual's and put in control of their care not just labelled high risk and put in a system which doesn't really meet there needs.

Women need more support after the birth

There are many additional issues women with epilepsy face following birth.  The additional issues around looking after a baby when you have epilepsy, weighing up putting in place safety features with just being a mum.  Breastfeeding while on anti epileptic medications and looking out for side effects in the baby.  Epilepsy medication levels varying following birth and side effects these may cause.  The issues around contraception and how epilepsy medication impacts on this.  These are all important issues to consider before the birth but also which women need ongoing support with after the birth.

Epilepsy Action have some great resources to help give women with epilepsy lots of information throughout their pregnancy journey here.

So what would I like to see in the perfect world?  I hope that every women with epilepsy is seen as an individual and given support and information from health professionals with specialist epilepsy knowledge so that rather than just being labelled 'high risk' they are supported to take control of their birth experience. 

Because I know from experience when you have a condition like epilepsy which takes so much control away from you by getting the right support and being given back as much control as possible it makes your birth experience so much more positive.

 

NEXT UP: Be sure to check out the next post tomorrow at Emily's Epileptic Days for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.

Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

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

 

We're off to the midwife of the year awards tomorrow

I nominated our epilepsy midwife Kim for the Emma's Diary women's midwife of the year awards and I am so thrilled that she won for our region and tomorrow we get to attend the awards ceremony to find out if she has won overall.  It would be so fantastic if she did firstly because her knowledge and support is incredible and she deserves to be acknowledged.  It would also be a fantastic way to get the issue of epilepsy and pregnancy into the media and bring it to the attention of midwives across the country.  Even  if it just means that a few midwifes decide to read a little bit more about epilepsy that can only be a good thing for women with epilepsy across the country.  So fingers crossed.

Epilepsy Action have written up our birth story and explained why we nominated Kim here, but I'm going to share the article below as it sums it all up perfectly.

Award-winning midwife, Kim Morley’s specialist epilepsy and pregnancy knowledge gave new mum a better second birth

Clair Cobbold had a very traumatic first birth. Despite wanting a second baby, she didn’t know if she could bear another experience like that. She tells Epilepsy Today how midwife Kim Morley gave her the confidence for a second baby.

Ahead of the RCM Annual Midwifery Awards ceremony on March 8, Clair Cobbold explains why Kim Morley is a very worthy winner of the South of England’s Midwife of the Year 2016 award, and nominee for the Midwife of the Year award.

 

“I was diagnosed with epilepsy 12 years ago when I was 19. It was just after I’d started university that I had a couple of tonic-clonic seizures.

 

“It took a long time to get the correct diagnosis, as the general neurologists I saw while at university and after returning home didn't recognise I was also having focal seizures. After starting medication, my tonic-clonic seizures went from one a month to one a year.

 

“Eventually, I was referred to Queens Square in London where they ran more tests and found I had temporal lobe epilepsy. I get focal seizures, which are like a feeling of anxiety sweeping over me and they can sometimes alter my vision. They only last a couple of seconds. I also get tonic-clonic seizures where I go very blue and it takes me a long time to recover from these.

 

“I changed medication about 18 months ago from lamotrigine to levetiracetam and for the first time since being diagnosed, I have been a whole year without having a seizure. So now I am reapplying for my driving licence back! I never thought this day would come and had accepted my seizures

were probably here to stay.

 

“I found being diagnosed with epilepsy at university hard. I felt it took away a lot of my independence and stopped me from doing the things I wanted. But I found a way to turn things around and became an Epilepsy Action Accredited Volunteer when I was 20. I have learned so much about epilepsy and now it's not as scary anymore. I don't let my epilepsy stop me anymore and just find ways to make it as safe as possible so I ride my horse and ski.”

 

Riley

 

“Riley was born on June 3rd 2012 weighing 8lbs8oz. Throughout my pregnancy I saw a lot of health professionals because I was considered high risk. The local hospital where I was planning to have Riley wasn't used to dealing with women with epilepsy. They all came up with a plan that was very medicalised and controlled. I just went along with it because I didn't know any different and I wanted us to be safe.

 

“When I got to hospital I was already a long way through labour (9cm dilated) but they decided to follow the plan anyway. They gave me clobazam to reduce my risk of seizures and an epidural to control my pain, as they were worried that could trigger seizures.

 

“Both of these slowed my labour down and 12 hours later Riley still hadn't arrived and we had both become distressed. I was taken to theatre and she was delivered by forceps. It was very traumatic and my husband, Rich, wasn't told what was going on and thought we had died.

 

Clair had a difficult experience of pregnancy and brith with Riley

“After the delivery, I was in a lot of pain and very distressed and confused. The neurological team at the hospital decided to drop my epilepsy medication dose back down to my pre-pregnancy dose overnight putting me at risk of breakthrough seizures.

 

“Rich wasn't allowed to stay with me on the ward and Riley was placed in bed with me to feed for hours on end as she was very upset. This put her at a huge risk if I'd had a seizure, which, luckily, I didn't.

 

“Following the birth, my husband and I were both very upset and found those first few months really tough. I had some very low times in those first few months and looking back, I wish I'd found help. But we got through those tough times and then I loved being a mum. We put lots of safeguards in place to keep Riley safe if I had a seizure.

 

“We feel blessed that Riley doesn't seem to have been affected by my epilepsy medication or the seizure I had at the beginning of my pregnancy. She is now a healthy, happy three-year-old, and has grown up learning a lot about epilepsy. She knows exactly what to do if I have a seizure and is a pro at getting trains and buses!”

 

Meeting Kim

 

Kim Morley won the RCM South of England Midwife of the Year 2016 award

“Epilepsy Action approached me to write for the pregnancy diaries and help with the HealthE mum-to-be campaign. I found that was a really positive thing for me. I wanted to make sure other women got more support during pregnancy and being a new mum than I did. Sharing my story seemed a good way to do that.

 

“It was, in fact, while helping with some pregnancy and parenting workshops for the campaign, that I first met Kim.

 

“A few years on, we started thinking about another child as we wanted Riley to have a brother or sister. But the idea of going through that trauma again was too much so we looked at other options. We looked into adoption, but unfortunately were rejected because Riley was too young. That was when I decided to have a chat with Kim to see if the birth experience could be different.”

 

Benji

 

Kim helped Clair gain the confidence to have her second baby, Benji

“Benji was born 2nd October 2015, weighing 9lbs. He is now nearly 5 months and doing well. I am breastfeeding him still and we are lucky because he sleeps a lot better than Riley did. He's a really happy, smiley baby and we feel really lucky to have him. Riley loves being a big sister and Benji thinks Riley's the best thing ever!

 

“Our birth experience with Benji couldn't have been any more different and most of that is due to Kim. The second time around, we just wanted things to be less traumatic and to be able to enjoy those first few months rather than battle our way through them.

 

“The first time we travelled down to see Kim (it's about 2 hours away from us) she gave us so much of her time. She just gave us the opportunity to talk about what had happened and to cry.

“She said she thought we had both suffered from post-traumatic stress following Riley's birth. She said things didn't have to be like that and we did have options to make a second birth a more positive one.

 

“Not long after that, I found out I was pregnant. I sent Kim a number of emails with questions and she just answered them in a calm reassuring way.

 

“We went down to meet her again and put my birth plan in place. Kim's knowledge about epilepsy and pregnancy is so incredible, that we just felt we'd found someone who could answer all our questions.

 

“Kim never told us what to do, she gave the control back to us. She asked us what we wanted and gave us all the facts and her own insight and together we came up with a plan.

 

Riley and Benji

“My biggest concern was that I didn't want the birth to be overly medicalised; the less intervention the better. Kim said that because my epilepsy seemed to be pretty well controlled, there was no reason why I needed lots of intervention.

 

“Kim gave us the confidence and medical backing to go to our local hospital and say we wanted a natural birth with low intervention. Kim made me realise I didn't have to say yes to everything the doctors said. She gave me the confidence to enjoy my pregnancy rather than worrying what might happen because of my epilepsy.

 

“When it came to labour I stayed at home for most of it as Kim had helped me come up with strategies to reduce my anxiety. I got to the hospital already ready to push so all the midwife had to do was catch Benji, pretty much. I just had a little bit of gas and air during pushing but other than that no other intervention – no clobazam, no epidural and no IV.

 

“I remained active during my labour, and I can remember the whole thing. Afterwards, I was able to just sit and cuddle Benji and even have a cup of tea and a shower and Rich was there the whole time. It was such a positive experience and my recovery after was so much better.”

 

Midwife of the year

 

“We were looking for a way to say thank you to Kim for all she did for us. When I saw the award, it seemed perfect. Without Kim, I don't know if we'd have felt confident enough to have another baby, and I wanted a way to say thank you for helping bring us Benji.

 

“I am so happy that she has won the south England region award! Kim doesn't realise how amazing she is. She is a very quiet person who doesn't shout about her achievements. And yet, she has made such a huge difference to the lives of so many women with epilepsy.

 

“She really deserves this award. I also hope it will highlight the need for better support for pregnant women with epilepsy to lead to better experiences for others.”

 

 

RCM awards

 

The RCM Annual Midwifery Awards 2016 will be held in London on March 8. The RCM will announce the winner of the Midwife of the Year award, for which Kim Morley is nominated. The Epilepsy Action HealthE mum-to-be campaign has also been shortlisted for an award at this event in the Best Charity Initiative category.

 

Epilepsy Blog Relay!

So I am taking part in this months Epilepsy Blog Relay, but what does that mean?  Well here's a bit of information about it and how you can get involved.

Living Well With Epilepsy’s Epilepsy Blog Relay is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma.

The concept is simple. 30 bloggers post on their own site, each taking one day of the month. In their post, participating bloggers are asked to acknowledge the blog relay with a link back to Living Well With Epilepsy and to promote the next day’s post.

This month the epilepsy blog relay is running to support Purple day which is on 26th March and the blog relay is going to cover the following topics week by week.

Week 1: Epilepsy in Everyday Life (Mar 1-7)
Week 2: Tech and Innovation in Epilepsy (Mar 8-14)
Week 3: Epilepsy and Families: Awareness Matters (Mar 15-21)
Week 4: Creativity and Epilepsy (Mar 22-28)

I'll be writing for it on 19th March, I'm still working on what I am going to write about so watch this space.

You can get involved on social media and spread the word using #epilepsyblogrelay

You can see all the participants and read their brilliant blog as they write them here.

 

Hello 2016 and the running shoes are back on!

Tomorrow Benji will be three months old, he's sleeping pretty well (giving me a good 4 hour stretch most nights followed by 3 hours) so what better time to start running again than New Years day!

Although saying that I don't want it to seem like this is a New Years resolution that will fall by the way side in a few days or weeks.  Far from it, running is something which has always been important to me, at school it was my way of coping with the stress of life at that time. I always wanted to run the London Marathon and was working towards that goal when I was diagnosed with epilepsy.

In fact it was while running that I had my first few seizures which really knocked my confidence at the time, made me fear running, but now while it makes getting back to running a little daunting it's also a big challenge which would prove my epilepsy was controlled once and for all.

Before getting pregnant with Benji I had started running again and it was going really well.  An added benefit of running was that it seemed to counteract the negative effects that Keppra was having on my mood, another reason I am so keen to get back to running again.

So all in all the idea of getting my running shoes back on today was a really positive step and it felt really good to be out running again, I feel my mood lifted already after just one run.  I'm not going to lie, it was tough and I know I have lost a lot of fitness but hopefully in 14 weeks I'll have built up to running 10k, that's where I was at when I was diagnosed with epilepsy 10 years ago.

After that I plan to start doing some park runs, working up to running the London parks half marathon next October and then the 2017 London Marathon - achieving an ambition I had long before being diagnosed with epilepsy but which has become all the more important as the years have passed.

And I'll be running the London Marathon to raise money for Epilepsy Action.  I don't even have to think about it, they have given me so much support over the last 10 years, without them I wouldn't be in the position I am now.  When I was first diagnosed it was at an Epilepsy Action event where an accredited volunteer (you know who you are) stood up and told his story, suddenly I saw a way in which I could turn this awful situation into something positive, into a way to help others.  Becoming an accredited volunteer turned my life around at the time, it gave me a purpose.

Epilepsy Action has helped empower me to become more knowledgeable about my condition than most of the health professionals I come into contact with.  They gave me the confidence to push for better care and the wonderful team I now have in London.  Probable most importantly they introduced me to Kim, the epilepsy midwife who helped give us the confidence to try for a second child after such a traumatic first birth, who empowered us to take control of my second pregnancy and made it such a positive experience.

I want to do something to make sure that others like me get similar support and facing the huge challenge of running the London Marathon just makes perfect sense.  Writing this post sets it in stone and hopefully if all goes well in just over a years time I'll be achieving a huge life goal while also raising money to help others with epilepsy gain the support they deserve.

So here's the reason I am running - for the two beautiful children we have been blessed with and the hope that others with epilepsy have the same support to start a family if that's what they want.

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

A birthday blog! A year seizure free!

Today I am 31, nothing special just another year older...  but today also marks 1 year completely seizure free. I still can't get my head around it as it was only 2 years ago that I came to terms with the fact my focal seizures may never be controlled. I can’t even remember the exact date of my last seizure just that it was in November last year.

So today marks the day I could technically drive again, not that I will because I still don't feel confident that it's controlled. Part of me thinks maybe it's because I was pregnant. Plus even though Benji sleeps better than Riley I still don't feel it's enough sleep and so don't feel safe to drive just yet.

In a few months when Benji is in his own room I will consider driving again but it's scary - I haven't driven in 6 years since my epilepsy was properly diagnosed as focal epilepsy. To just be handed your licence back brings mixed emotions - joy of course that I can have a bit more freedom but also fear of being able to drive and also losing that freedom again.

A lot to get my head round! But the main thing is I am now a year seizure free, the keppra looks like it's working, it's my birthday and the most amazing thing happened this morning. Riley woke up and said 'Happy Birthday Mummy' - she just remembered :) one happy mummy - the best present ever!

Sleep - the big issue!

Today a miracle happened, to many it may not seem much but to me it was a miracle - Benji was lying on the bed watching me put away the washing happily babbling away and then the next minute he was asleep! Then I realised it wasn't the first time, I didn't realise babies could do that... settle themselves, Riley never did... so it took me a good few minutes to decide how to use this time, do I shower, tidy the house, I just never had this with Riley!

It's funny as I had just been reading a great article on sleep in babies and a comment underneath said:

"I don't understand why parents have such problems with getting their children to sleep through the night - my two did from a few weeks old - it's all about a good routine"

Well I thought, I dare you to have a third child...

Sleep... I was a bit obsessed with it before having kids, but now at least it seems everyone is talking about it not just me!

I think for many of us with epilepsy sleep is so important, and I know I feel more at risk of seizures after a bad night. The thing with sleep is while it is something we have some control over, for example, chosing what time to go to bed and having good 'sleep hygiene' as the professionals put it... There is also a lot we don't have control over like whether out bodies and minds will actually allow us to drift off and whether the neighbours are planning to turn their music up to top volume... so no wonder it's such a hot topic in the epilepsy world and why I have always obsessed over it.

When we had Riley we got no sleep I mean I was literally adding up the minutes between her waking to get to a total of 2-3 hours a night. We tried everything and I mean everything - white noise, singing seahorse toys, lullabies, dummies, the list was endless. We had done everything by the book, starting a bedtime routine from day one and she just would not sleep. By 6 months we were desperate so we did controlled crying - Google it... I dare you!

Controlled crying is highly controversial. We had friends who had done it and their children seemed fine and we really didn't have much choice with Riley, we'd tried everything and I was going back to work soon and a seizure was a real risk. Well we used the super nanny technique and the first night she screamed for 2 and a half hours and I cried my eyes out. But the next day she woke up happy and was in such a good mood. By day 3 she was able to self settle herself in just a few minutes and it changed our lives finally I was getting a decent stretch of sleep just waking to give her a night feed.

Now aged 3 she sleeps through the night consistently and has never got out of her bed but she has very much been trained to sleep, she needs her routine and a quiet dark room to get to sleep which makes holidays a little tricky but we get round it by chosing holiday cottages rather than hotels.

Now Benji seems like a saint in comparison although if he were our first I think we'd still be exhausted - as I said before he can just drop off to sleep sometimes which is a new experience for me.

He just struggles to settle at night to begin with and doesn't always settle after his night feeds and quite often wants to suckle on our fingers (he won't take a dummy). Once he is asleep he'll sleep for about 4 hours between feeds which gives me a decent stretch of sleep. I don't know how I'd cope with a 3 year old as well with any less sleep so I am so grateful he sleeps better. Now we just need to work on him self soothing to sleep at night so hopefully we don't have to go through controlled crying again!

Our first few weeks ~ settling in

Sorry I haven't posted for a while, it's been a crazy few weeks of adjustment to having two little people to care for. Can't believe he's 6 weeks old tomorrow! Here's a little bit about our first few weeks as a family of four.

Baby Blues

So last time I really struggled with low mood and looking back it was probably either post natal depression or post traumatic stress.

We had an excellent midwife visit the first day, she seemed to know more about epilepsy than anyone else I had spoken to at Epsom. She asked about my keppra dose and whether it had dropped and said it could rise a little now and because keppra could effect mood it could make the baby blues worse. It was something I hadn't even considered but just acknowledging it made me feel less worried.

I've had some teary moments and some down times especially when I am tired and feeding hurts. It's not easy bringing up two kids. I feel like caring for a baby this time round is easier but added to the mix is making sure Riley still gets the time and attention she deserves.

I will write a separate post about this soon as it's something I feel needs to be spoken more about.

Feeding

So this time round feeding has been a real challenge. Luckily we have some great breastfeeding clinics near us who have helped. Initially he just wouldn't latch on at all and I was so worried I had no way to feed him. But the midwife showed me how to hand express and feed him out of a little cup - he was able to lap it up like a cat.

The first couple of weeks he slept so much, completely different to Riley! I was so worried it was the keppra. I emailed the epilepsy midwife she suggested taking my meds just after feeding him so that hopefully when the levels peak (an hour or so after) he won't need a feed. This seemed to help. She also said they could take levels in my breastmilk but as by 3 weeks he seemed a bit more awake, was waking for feeds and was finally back to his birth weight (having lost nearly 11%) I decided we probably didn't need to.

Now I am struggling with sore chapped nipples. It hurts so much it makes me cry sometimes. The breastfeeding councilor helped adjust how I put him on so I am hoping that will help with the soreness. She also said breastmilk is the best thing to help them heel. So we will see if it improves.

All I can say is it is hard and every baby is different, just because you breastfed last time doesn't mean it'll be easier second time! But I hope the benefits make it all worth while.

Sleeping

Well don't want to say too much as don't want to jinx it but he's a pretty good sleeper. He usually goes between 2-3 hours between feeds and sleeps in his moses basket. So I'm getting 5-6 hours a night which isn't bad. I'm still tired as it's broken and let's face it I could do with more especially as my meds make me tired but it will come and I can't complain as could be a lot worse.

Epilepsy

Incredibly I still haven't had a seizure, not a focal or a tonic clonic, so that makes it 1 year pretty much. It's the longest I have ever been without a seizure and can't quite believe it. I'm not about to go out and get my driving license as I need more time to feel confident. It's a strange thing being seizure free after living with something for 10 year, a third of my life. It's hard to explain, part of me is over the moon and the other part is scared to accept it in case it gets taken away like it has so many times before.

Smiles

And so it started happening at about 3 weeks - proper big cheesy grins. Now he'll smile right at you and it just makes it all worth if. All the tough bits are made up for by that one cheesy grin!

I'll leave you with some pictures of our first few weeks (including some cheesy grins!).

Mindfulness ~ my lifeline over the last six months

Mindfulness has received mixed press recently.  While lots of people praise its benefits it is also being labelled the latest craze and many companies are pushing to make money out of it.  It’s sad really when all the scientific research is pointing towards it being an effective way for us to treat conditions like anxiety and depression which up until now it has been all too easy just for doctors to prescribe pills to ‘solve’ these complex problems.  

Mindfulness takes work and dedication, at the end of the day it is changing the way we look at the world and  acknowledge our own thoughts.  But I have to say having spent the last six months using it to overcome my pregnancy anxiety, it really does work and I will be taking what I have learnt through mindful birthing forward into the rest of my life.

Foundations of Mindfulness

Beginner’s Mind – don’t let fear from past experiences take over new experiences

Non-judging – things don’t have to be good or bad they can just be

Patience – learning not to let things get to you by coming back to the breath

Non-striving – there is nothing to achieve in mindfulness, it’s all about learning to be more present

Self-reliance – learning to listen to ourselves

Acknowledgement – accepting things just are without trying to change them

Letting be – learning to accept situations as they are without trying to run away from them

Kindness – towards ourselves and towards others

The first thing to learn is how to use the breath as a tool to bring you back to the present moment.  Breathing is something we all take for granted, it keeps us alive, and yet it is something we carry with us all the time without even thinking and something we can use to focus our mind on.  Once you come to realise how amazing our breath is you understand how powerful it can be in reducing anxiety and depression.

Once you have got your head around the breath you can move onto a variety of both formal and informal mindfulness practices.  The idea of formal mindfulness practice is to take time out of your day to ‘formally’ carry out meditation.  These sorts of practices include:

• Body scan – where you really think about the feelings and sensations in your body
• Yoga – using the breath as part of a series of stretches and exercises
• Pain Practice – using Ice Cubes to simulate contractions and learning to use the breath to cope
• Walking meditation – concentrating on the rhythm of walking
• Loving – kindness meditation – sending loving thoughts to your baby, yourself and others

Informal medication is how mindfulness slowly takes over your life and makes you look at life completely differently.  It’s all about taking opportunities to focus on the here and now.  It might be just taking 2 minutes at work to really focus on your baby’s movements or when you feel pain or an itch.  It could just be taking the time to really concentrate when you are brushing your teeth or walking in the park rather than letting yourself get caught up in your thoughts and missing what is happening in the here and now.

Mindfulness somehow seems to address all the issues around birth.  Whether it be the straight forward how am I going to deal with the pain of labour or the more complex emotions of fear and anxiety from a previous traumatic pregnancy and labour.  To the even more complex emotions of losing a baby in the past – there seems to be a way for mindfulness to help and so I would recommend it to anyone – no matter the situation.

Mindfulness also is so important in our future roles as parents.  Parenthood is filled with challenges, from the pain and struggles of breast-feeding, sleepless nights, sick children, temper tantrums, potty training, the list is endless.  Being able to take a deep breath and let go of our anxieties and judgements allows us to view all these challenges in a more clear way and make better more balanced decisions.

Mindfulness also strengthens our relationships with our partners, how can it not, values like patience and non-judgement can only ever strengthen a relationship.  Becoming parents is hard, having a baby will never fill gaps in a relationship, it will only highlight them all the more and gives so many new opportunities for problems to raise their heads. Mindfulness teaches us to be kind and loving, to try to understand how the other person is feeling and to take a breath before we say something we later regret.  I believe mindfulness helps to fill gaps in our relationships and so I know I will make sure I continue to use it to help me to cope with the challenges of life.

Injection time ~ and a chance to build a few life skills!

I had been thinking a lot about the best way to give Riley her MMR and preschool boosters as to me giving a baby two injections at once seems quite mean but at least they don’t remember it after.  But take a three year old who is just developing her own strong opinions on how things in her life should work and it seems to me like a recipe for disaster.  Added to that the fact that I know vaccinations can make you feel a bit rough I decided it would be better to have them done separately.
 

Then I realised I could time Riley’s MMR with my whooping cough vaccine, it seemed like the perfect situation.  We discussed what would happen at home when I had made the appointment and that we would both be getting injections in a few weeks which might hurt a little bit at the time but would make sure we didn’t get ill.  Riley seemed happy with this and after asking a few more questions went back to playing happily.
 

So yesterday was the day and it was pouring with rain, so after a 45 minute walk to the doctors I was soaked and feeling a bit fed up (it’s days like yesterday when I really miss being able to drive).  As we entered the nurses room the nurse said, ‘did you get my message?’ I said ‘no’ and she explained most people get the two vaccinations done together as it can be quite traumatic for the child.  Riley can’t have her pre-school booster for another few months so the nurse suggested we waited.
 

I explained we had talked about what was going to happen and I wanted her to have her MMR now and pre-school next year (as in a couple of months we would be a bit busy with a new baby) and Riley then said ‘Mummy’s going to have her whooping cough injection first and then I am going to have my injection, I’m a big girl, I’m three’.  I think the nurse was quite surprised that Riley was so clued up on what was about to happen and yet not making a fuss at all.
 

Riley sat on my lap while I had my injection and then snuggled into me for hers.  She then turned to the nurse and said ‘that didn’t hurt and that she didn’t want a plaster because mummy didn’t have one’ and then she chose a sticker with a dinosaur on and explained it looked like Dub (her imaginary dinosaur) and skipped out of the room saying a cheery ‘thank you, bye’.  The nurse smiled and said if only they were all that easy!  Riley then walked home skipping in all the puddles as she went.
 

We’ve always tried to be open and honest with Riley about everything, explaining things to her in as simple a way as possible but without hiding things from her.  I think sometimes people don’t give young children enough credit for what they can deal with and maybe we shelter them too much.  It’s all about giving them the tools and support to be able to deal with what might happen in life – life’s not perfect and does have good and bad bits and part of our role as parents is to equip our children to deal with this and make sure they know they are loved and cared for no matter what happens.

For us my epilepsy means we have no choice but to talk about some difficult situations.  Things like injections are a good exercise for doing this too and I am so proud of how brave and grown up Riley was yesterday. 

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.