WARRIOR MUM - CLAIR COBBOLD'S JOURNEY

Mum with Epilepsy - Pregnancy, Childbirth.


I'm absolutely delighted to feature Clair today. I hope by reading her story you will leave feeling far more informed about Epilepsy than you were. She is a great role model for all to see and I hope you enjoy her story. 





Clair's Journey 

 "I remember the day my neurologist told me it was epilepsy. I think at the time the biggest thing was he told me I couldn’t drive anymore. After another seizure I started medication. I was miles away from home, scared I’d have more seizures and starting medication (Lamotrigine) which initially had some horrible side effects (I would have panic attacks in my sleep). It was a tough time but I was determined to make it through uni and I did. By the second year my seizures seemed controlled and my confidence returned, I got my driving licence back and all seemed back to normal.

 

Me pushing Nikki

I was born in Guildford on 30^th November 1984.  My childhood was pretty normal; I grew up in a small, close and supportive family with my Mum and Dad and a younger sister called Nikki.  I loved junior school, I went to a very small school where there was a huge mix of different nationalities (it was a boarding school as well as a day school, I went as a day student) as well as abilities with children with learning difficulties and other disabilities.   
I think it meant I accepted people no matter what their background and has stayed with me throughout my life so far.

My senior school experience was not so great, I didn’t really fit in so just kept my head down and worked hard and ended up leaving with good grades which looking back was the most important thing.  I took a gap year working in a school and really became much more confident in myself which meant going to uni wasn’t quite as daunting.

Did you develop epilepsy in childhood?

It was a few weeks before going to uni that I had my first major tonic-clonic (convulsive) seizure, all I remember is waking up in a Hawthorn bush very confused and managed to stumble home.  Because I had been out running on my own at the time doctors thought I had fainted and then bumped my head and so I went off to uni not really thinking much of it.  A few weeks after starting uni I was out running with the athletics club when I had my second seizure and ended up in hospital, that was when I really knew something wasn’t right.  It was a few weeks until I was referred to a specialist cardiologist (because it had happened running they wanted to rule out a problem with my heart) she said she didn’t think it was anything to do with my heart but ran the routine tests anyway and referred me onto a neurologist.

I remember the day my neurologist told me it was epilepsy, I think at the time the biggest thing was he told me I couldn’t drive anymore.  After another seizure I started medication, I was miles away from home, scared I’d have more seizures and starting medication (Lamotrigine) which initially had some horrible side effects (I would have panic attacks in my sleep).  It was a tough time but I was determined to make it through uni and I did, by the second year my seizures seemed controlled and my confidence returned, I got my driving licence back and all seemed back to normal.

Me with my sister Nikki

After leaving uni I went a couple of years without any major seizures then had one out of the blue, since then it has pretty much gone like that, I seem to go a year or two without a major seizure then just have one out of the blue.  I don’t get a warning so it is always in the back of my mind, as time goes by I become more confident but I do worry about it especially now I’m a mum.

After a few more seizures I lost all confidence in my neurologist and after him telling me the contraceptive pill didn’t reduce lamotrigine levels when I knew it did (the drug company said so!) I demanded to see an epilepsy nurse, I said I’d go anywhere and in the end was referred to the National Neurology and Neurosurgery Hospital in London.  I felt a bit like I was wasting their time, I didn’t think my epilepsy was bad enough to be there.

But it was a turning point in my care, for the first time I felt like the doctor knew more than I did (I was always very good at reading up on my epilepsy on charity websites, medical journals and the drug company websites!).  She told me I was right about the contraceptive pill and took me off it, she put my folic acid up to the correct dose for a woman with epilepsy who may start a family (to help reduce the risk of birth defects) and found I had a vitamin D deficiency, something which is common in people with epilepsy due to their medication.

But the most important thing she said is that I was probably having partial seizures as well.  All my life I had had these episodes, they lasted a fraction of a second and are difficult to describe, they are sort of like a wave of emotion which washes over me and then my vision changes briefly.  People don’t even notice I have them.  They can never be sure they are seizures (they only happen once or twice every few months so will never be caught on an EEG) but I had always thought they might be and now a specialist agreed.

This changed everything, it meant I had never been completely seizure free and even now with my medication as high as I can go I have been 2 years without a major tonic clonic seizure but I still have the odd partial seizure which I can live with.  But it means it always sort of there…

I never let my epilepsy stop me doing the things I loved.  I have grown up around horses as my family run a livery yard.  I have had a few lovely horses in my life, but for the last 14years... half my life... I have had Mac in my life, I don't think I ever took him for granted, I always felt very lucky to have a horse who you could rely upon so much.  He looked after me, he was so sensible, he wouldn't make a fuss about things and he was so much fun, we used to do gymkhana, he loved it.  I always felt able to just go for a ride, think things through and get away from things for a little while. My epilepsy didn't really bother me when I was riding Mac, I knew he'd look after me if anything did happen. But one Sunday night he had to be put down. It was completely unexpected. He had a few health problems but nothing major, he got a twisted gut and so my Mum had to make the incredibly hard decision to say goodbye.

It didn't seem real. I know some people will say, he's just a pet, but to me he was more than that; he was a friend, he'd always been there for me, horses never judge. He was there through the good times and the bad, when I was being bullied, when I was diagnosed with Epilepsy I'd sobbed into his mane. He was a big part of all the best times of my life too, I remember revising for my exams on our Saturday rides with a friend, we'd write everything onto flash cards and take them with us!!! Whenever something great happened in my life I'd go for a ride all happy and it would give me time to take it all in.

Mac changed my life and there will never be another horse like him.

                           Do you have much family support?

Mum and Grandad

Without my family I don’t know what I would have done.  On a practical side my mum would drive to and from Norwich (where I was at uni) but more than that she stood by me, supported me through the whole thing, always there for me.  My Dad would look things up and give me lots of useful information and my sister was a true friend, we had always been really close.

Another person who played a huge part in my life was my Grandad, I was very close to him.  I saw him all the time, because I couldn’t drive he would give me lifts everywhere and it gave us a lot of time to chat, we would talk about everything.  He died very suddenly 2 weeks before Riley was born I found that very hard, I didn’t really get a chance to come to terms with him being gone before Riley arrived and that made the first few months of being a mum very hard.  I miss him every day but as time passes the sadness turns to smiles at the precious memories I have of him.  I will never forget him.

            How did you meet your husband?

It was during my lowest time that I met my husband to be Rich, he was a friend of a friend.  I met him when I went down to visit her at uni.  I remember we went for breakfast while my friend was at the doctors and when I told him about my epilepsy I just broke down in tears. I expected him to run a mile, thinking I was some crazy girl.  But he didn’t, he supported me, even though he hardly knew me.  After a while we started going out, but being on opposite sides of the country it was a true test.  We made it through uni and moved in together.  That was almost 10 years ago now, we got married 3 years ago, we had a small service in a country pub and a meal, then went to Scotland for a week and came back and had a big party for our more extended family and friends.  It worked really well, I didn’t want to do it all on one day and get tired and risk having a seizure.  Rich is my rock, he is always there for me, we are a little team through the good times and the bad.

What did you study at university?

At uni I did physiotherapy, I never really enjoyed it… maybe that was because I missed so much of my first year or maybe it just wasn’t for me I will never know.  On leaving uni the physio job situation was dire. So I took a job as a support worker at an epilepsy centre and then became an assistant unit manager.  They never really worried about my epilepsy there.

During a period where I seemed to be seizure free I moved onto a rehab centre for children with brain injuries as a rehabilitation care assistant.  I loved it, but then my epilepsy reared its ugly head and I this time I wasn’t allowed to work one to one with the children.  I struggled on for a long time but it was frustrating and upset me how my epilepsy was effecting my work, I could understand they needed to protect the children but it didn’t make it any easier.

After returning from maternity leave I decided I needed to move and do something that my epilepsy wouldn’t impact on.  I loved the place I worked, the work they do for children with brain injuries and their families is second to none.  I role came up as online community co-ordinator and it just seemed perfect, being able to still support families but online was perfect.  I have been doing it for 3 months now and I really love it, it has worked out perfectly for me.

 What kind of pregnancy did you have?

In a nutshell my pregnancy was definitely a challenge.  6weeks in and I had a major seizure which wasn’t a good start.  The first worry I had was the possibility of birth defects from the epilepsy medication and with the added worry of how the seizure might have effected the baby the first scan was terrifying but when everything seemed to be perfectly average I was so relieved.

Epilepsy medication and birth defects is a difficult issue for women to face, do you reduce your medication and reduce the risk to the child from the medication but risk having a seizure and that effecting the baby?  For me having a seizure at the beginning made that decision for me, I needed to make sure my medication levels remained high (I had blood tests throughout as drug levels tend to drop during pregnancy and so my dose was increased accordingly).

The rest of my pregnancy passed without any more seizures.  I had lots and lots of different appointments both at the hospital I was having my baby at and with my epilepsy specialist.  I never had any of the choices other mum’s might have had like home or water births, but I didn’t mind I just wanted my baby to arrive safe.  I was lucky enough to have a clear birth plan, I took Clobazam, another drug, during labour to reduce the chance of me having a seizure and had an IV put in as soon as I got to hospital so that emergency medication could be given if I started to seizure. 

I had an epidural put in to reduce pain to reduce the risk of a seizure and to allow for a quick caesarean if I had a seizure.  The labour was definitely not straight forward but had nothing to do with my epilepsy, but my beautifully health little girl, Riley Elizabeth arrived (with a lot of help from some forceps) at 6pm on Sunday 3^rd June 2012 (The Royal Jubilee).  I was also very lucky that one of my oldest friends was a student midwife at the hospital and had followed my whole pregnancy, attending all my appointments using me as a case study, it meant she knew exactly what had been decided by all the health professionals I had seen during my pregnancy, and she helped deliver Riley.

How are you enjoying motherhood?

I think that it’s important to point out that the everlasting bond with your baby doesn’t always happen straight away and I think that makes you feel really bad about yourself.  Having a baby changes everything, it takes time to adjust.  I loved Riley from the beginning, wanted to keep her safe, but it took time to get that special bond between a mother and child.

Being a mum is a fantastic feeling, I love being a mum.  It has its tricky moments but watching Riley grow and learn new things, you just can’t explain how proud it makes you feel.  And the knowledge that you are their whole world and the unconditional love they give you is truly amazing.  I can’t imagine life without Riley now, without her cheeky grin and goldfish kisses, she means the world to me, words just can’t explain it.

Epilepsy doesn’t stop me being a mum, my epilepsy nurse always made a big thing about that.  It’s all about weighing up the risks of having a seizure with being able to be a mum.  There are things I have done to reduce the risk to Riley.  My parents bought me an epilepsy monitor so my Mum is contacted if I have a seizure.  When Riley was little I would carry her up the stairs in her car seat and I had a dead brake put on my buggy by a charity called re-map.  I don’t bath Riley on my own, I wait for Rich to get home and I try to do as much as possible on the floor, for example, breast feeding, changing and feeding.

Not being able to drive is hard as a mum, I think it can stop you getting out and about and make you feel isolated.  I made sure I never let that happen, I found local baby groups and got out to them.  I soon made friends who would come to my town to have a coffee to make it easier for me.  By the time Riley was a few months old we had the buses and trains all figured out and now I can get pretty much everywhere.  I am also lucky enough to have fantastic family and friends who look out for us and will always give us lifts places.  We are very lucky.

I feel very lucky for all the medical support I received and for the support Rich and my family have given me, but I know for many women that is not the case.  I started my blog and got involved in the Epilepsy Action HealthE Mum’s to be campaign to try to help other women feel confident to become Mum’s.  I believe Epilepsy shouldn’t ever stop someone from being a mum.

 

   

I've been asked to give an epilepsy awareness presentation to some students and staff at a school in Maidstone.  Apparently it's quite a lot of people which is a bit daunting but will be really good to reach that many people and for me to build my confidence.

I'm not quite sure how I'm going to go about the whole thing, luckily I'm not doing it until January so I've got a while to figure it out !  Scary stuff!
 
There's so much to talk about, especially the myths surrounding epilepsy and also the

Epilepsy Action Pregnancy Campaign which seems to be reaching a lot of media.

Busting a Myth – you can’t breast feed if you’re taking epilepsy medication

Just wanted to say a bit about Breastfeeding as don't think I really ever blogged much about it. I've read a few people's comments that health professionals told mum's after giving birth they couldn't due to the meds.

FACT: most mum's can breastfeed when taking epilepsy meds.

There are a couple of meds that are an exception, and it’s important to talk to your specialist or epilepsy nurse before the birth so you know the score and can stick to it whatever anyone else says. It's so unfair to be told you can't straight after the birth only to be told a few days later you can by which time it can be very hard or impossible to start.

If you think about it they've been taking a small dose throughout your pregnancy, the small amount in your milk is negligible when they are growing so fast.

I breast feed until Riley was 16 months. I was a bit worried about night feeds and seizures because I was tired so we always said if I'm too tired Rich would help at night either with expressed milk or formula but turned out I was ok.

Breastfeeding’s not for everyone, it can be hard. I found the first few months a challenge, not due to my epilepsy, just normal mum things, but after 3months it became easy. The main thing is you have the same choice as everyone else, having epilepsy doesn't change that. But never think just because you don't breastfeed you don't develop such a strong bond, people who say that are very unfair, it's not for everyone but don't let your epilepsy effect that decision.

I hope that the campaign and being able to tell as many people as possible my experiences of pregnancy and being a mum, will help women feel more confident and less alone. Hopefully it will also help health professionals have a better understanding of epilepsy and pregnancy and some of the issues and worries women with epilepsy face during pregnancy and as a new mum.

I'd also like to mention Epilim, which is a drug that's been in the media a lot recently. It is a drug that carries a higher risk of birth defects and developmental problems than the other medications available. For women who have been taking Epilim for a long time and it is controlling their seizures well, it is a really hard issue to face. Changing medications can take time to get right and the impacts of having a seizure (e.g. losing your driving licence) can be huge. At least now with all the work charities like FACS are doing www.facsa.org.uk to raise awareness, women are more aware of the issues surrounding Epilim, allowing them to make an informed decision with the support of their specialist. But until recently a lot of the problems have been hidden. In my opinion Epilim should never be used as a first choice of medication in any female who could potentially in the future have a child, that includes teenagers, but this is not the case, I know a co-workers daughter who is 18 has just started on Epilim as her first drug... you have to ask, why?

Finally, I hear you were on the front cover of the Guardian Epilepsy Supplement in May - that must have been exciting?

The Guardian newspaper published a supplement dedicated to epilepsy to support National Epilepsy Week... turns out we're on the front cover!!! I didn't realise it was going to be the main part of the cover, thought it would just be a little bit in the corner! It's great to see that pregnancy and epilepsy is being covered so much, hopefully it'll make a difference to lots of other women out there, feel quite proud to be so involved in the campaign. 

I think every parent worries about their babies development. I know that all babies develop in different areas at different rates but at the end of the day almost all of them reach the same point eventually. I guess I worry about it from an epilepsy meds point of view, in the back of my mind there is a little niggle - what if my AEDs have had some more long term effect on Riley. But the truth of the matter is Riley is developing like a normal child would, she’s not been the first to walk or the first to talk but she is doing all these important things and I think the more she achieves the less worried I become. She is truly amazing and I am so so proud of everything she does.

I love being a Mum. Watching my little girl develop and learn new things every day is amazing. I never thought I could love someone like I love Riley. I want to keep her safe, want to show her the world and the fact that I am her whole world is a pretty scary but I feel very lucky that she trusts me so much. We have so much fun together, we go to baby groups, picnics, play in the park and I have made so many wonderful friends in the Mum's I have met through her, she is my whole world. I also have epilepsy but to Riley I am just her Mum. It does mean that some things have been more of a challenge, I have had some extra worries but I have done it and I would hate it if Epilepsy stopped any woman from experiencing the most amazing feeling in the world... being a Mum.  So I have got involved with the Epilepsy Action pregnancy campaign – HealthE mum-to-be and written this blog in the hope it will help even just a few women.

 

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