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.

 

Adapting to life with two children!

I can't believe I haven't posted since January, that's how quickly life with two children is flying by.  So I feel I need to give a bit of an update on what has been going on over the next few months, so here goes.

Life with two children

So it's taken some getting used to but I think we are now in a fairly good routine, Riley is at pre-school two mornings and one full day a week which means I get some time with Benji to really concentrate on him.  It's still quite a challenge thinking about when Benji needs his feeds and nappy changes alongside when Riley needs to go to the toilet and pick ups from pre-school on the bus!

Benji's development

So Benji is 5 months old now and doing really well.  He's growing really fast and weighs 16lbs 8oz now.  He's very different from Riley in his personality, he seems to do a lot more thinking but is such a smiley chilled out baby.  I just love seeing his smile when he wakes up in the morning. 

In the last week he has found his feet and is sitting independently for a few minutes at a time.  He can also stand up holding onto things and loves to look out the window like Riley used to.  He is also becoming much more co-ordinated with his hands and is able to grab toys and really investigate them.

He also loves songs and actions, he's just really interested in the world and is becoming a proper little person.  Can't imagine life without him around now.


Breastfeeding and weaning

So I am still exclusively breastfeeding Benji and I have to say it's not been easy but I am glad I have persisted.  I was quite ill for almost 3 weeks, I think I had the flu which then turned into a chest infection and I was really struggling to get enough fluids in me to keep my milk quality up so I just ended up dehydrated.  I am also struggling to get enough calories to maintain my weight, the same thing happened with Riley.  At the moment that's not a problem as it just means that I have lost all my baby weight and a bit extra which isn't a bad thing but I don't want to keep losing weight at this rate so I will be glad when Benji starts eating a bit. 

Which brings me onto weaning, we gave him a little bit of carrot today which he seemed quite interested in and he took a few sips of water from a sippy cup. We're going to take things nice and slowly as he's only 5 months so still early days but he is showing all the right signs, putting everything in his mouth, started sitting up and really interested in what we are eating.

Sleep and mood

So Benji has started waking a bit more in the night, not to the same extent as Riley used to but he is usually up 2-3 times for feeds and sometimes is awake for an hour or 2 in the night.  He does however settle himself and sleeps in his cot for naps in the day which to me is a miracle compared to the problems we had with Riley.  I do struggle when I don't get more than 3 hours sleep in a row and it does effect my mood, partly I think because I just need quite a lot of sleep and partly because I then worry I might have a seizure and having been seizure free for 16 months I don't want to ruin that.  I have also had to cut back on the running firstly because I wasn't well and then because I don't feel I'm getting enough sleep so it's a bit of a catch 22 because running helps my mood but if I haven't had enough sleep I don't want to risk having a seizure by running.  I'm hoping to get back to it as soon as possible as still planning to run the 2017 London Marathon.

As far as mood is concerned I feel really let down by my health visitors, I told both my GP and health visitor I was feeling low at my 6 week check.  It took them 2 weeks to even call me to follow it up and then they just left a message which I lost and so I never called them back and yet no one ever followed it up.  I was pretty high risk having struggled following my first pregnancy and also being on a medication which is linked to problems with mood.  It just makes me upset that I asked for help and they only made one attempt to see if I was ok.

Potty training

Potty training is still on going with Riley.  It's hit and miss, and always seems to be more of a hit when there is something in it for her, so at the moment she gets points for each wee and poo she does and then she buys lego from the 'Daddy shop' each evening and the number of accidents has definitely reduced!  She's still not great at telling us when she needs it but at least we are getting by, I just worry about what will happen when she starts school.  Sometimes I get frustrated but I need to remember there is always the possibility there is something physically wrong because of my meds but that can't be investigated until she is older.  So for now we just have to find a way to get by which I think we are doing.

Driving

Well I am currently applying for my licence, I haven't done a great job of filling in the form and it's been sent back twice but hoping third time lucky.  Part of me is excited to get some independence back and part of me is terrified of actually driving again after so long and also the thought that I could lose it again if I have another seizure... so not quite sure how I am feeling about it all at the moment.

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.

Benji's first Christmas and the end of 2015

Benji's first Christmas turned out to be pretty great.  Riley really got Christmas this year and it was just so magical to watch her face light up with all the magic of Christmas.  We are starting to build our own family traditions, visiting the Christmas lights, Olympia and making church and the religious side of Christmas which is so important to me fun.

So here are a few Christmas photos, which sum up the excitement of the end of what has been a very eventful year with the arrival of Benji who really does make our little family complete.