Dear Keppra

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30, 2016. Follow along!

When you were first mentioned to me many years ago a quick google revealed your true colours, your suicidal tendencies, the rage you inflicted upon people and fatigue so horrific I wouldn’t be able to pull myself out of bed in the morning.  I didn’t want to know you if that was how you treated people.

I would continue on with my good friend lamotrigine, I had known her for eight years, she had helped me, reduced my big seizures from one a month to one a year, I could live with that.  She wasn’t too bad, if anything she had mellowed me, made me feel more in control of my mood or maybe it was growing up, becoming an adult, I was 19 when I met her.  Anyway she seemed safe and I had changed my life to incorporate those out of the blue seizures once a year or so, life plodded on.

But then lamotrigine seemed to abandon me, two big seizures in three months and more focals in between.  I was lost, my safety net gone, eight years she’d stuck by me, eight years she’d brought a bit more control in my life and now what she just left me. Anxiety was taking over, anxiety for the future, anxiety of seizures, anxiety of my own safety.

And amongst all this anxiety your name was mentioned again, Keppra is your best choice now they said.  But why would I want to start hanging around with a suicidal, energy draining, maniac when life already seemed so out of control again and I had my little girl to think about now too. But there didn’t seem much other choice.

And so you entered my life, at first I was exhausted you literally drained all the energy from me, I would sleep all the time.  Then as lamotrigine left the scene completely along with her mellowing nature I felt you pushing my buttons, making me angry, making me sad. It was tough, I hated you to begin with, I am not going to lie.

But then after six months of putting up with you I realised something, I hadn’t actually had any big seizures since I met you and the small ones were so reduced… that was weird… I had come to accept I would never be completely seizure free, now suddenly you introduced me to a new feeling… hope… it was weak and I tried to push it back but it was definitely there, a glimmer of hope for a seizure free future.

But if this relationship was going to work out something needed to change… I couldn’t be this tired all the time and my family didn’t deserve me snapping at them every five minutes because you were pushing my buttons.  I needed to find ways to live with you.

Someone suggest vitamin B6 so I gave that a go, it seemed to help a little bit… but I needed more. While running when exhausted seemed counterproductive and a little risky as that was how my seizures had started I decided to try. If nothing else it would test whether you my new ‘friend’ that had been thrown into my life was really worth all this effort or was it just coincidence.

The running really seemed to be helping, I was less tired and more in control of my mood, I also felt more alive, less mellow… it meant I could feel the highs as well as the lows so maybe you weren’t so bad after all. 

Then I found out I was pregnant, the running had to stop, it wasn’t worth pushing myself and having a seizure and I didn’t want to take the vitamin B6 while I was pregnant either. So I was mixing you Keppra with pregnancy hormones and all the anxiety from my last pregnancy, I was a mess.  I needed to find a new way to cope and that was when mindfulness walked in.  Mindfulness was that beautiful friend that everyone was talking about but who was so quiet no one could be bothered to actually take the time to really get to know her.

But in my desperation when you Keppra were pushing my buttons and I couldn’t turn to running or vitamins it was then I took the time to get to know mindfulness and she made me look at life completely differently.  She showed me that while my thoughts maybe fluid with ups and downs, maybe partially controlled by you Keppra, there are ways for me to stay in control of them.

Keppra, you controlled my seizures through pregnancy, through the ups and downs of all those hormone changes, lamotrigine didn’t have that strength.  You kept me and my little boy safe and allowed me to have the birth experience I wanted this time round not led by the doctors, led by me, for that I am eternally grateful. Yesterday that baby I carried for nine months turned one, he is healthy and happy and doesn’t appear to have any problems, I can’t thank you enough.

You have been part of my life for three years now. It’s not been an easy relationship, we haven’t always seen eye-to-eye, and I have had to adapt life to live with you, with a little help from mindfulness. You are one strong minded friend that’s for sure, and I call you a friend now… for you have opened up a world of opportunities, allowing me to drive again, run marathons and just slowly regain my confidence.

I feel blessed to have you as a friend, to have these opportunities in life again. But I am scared too, you are pushing me to do so much more with my life, life isn’t just plodding along like it did with lamotrigine.  But what if you abandon me like lamotrigine did and all the seizures and anxiety returns, what then?  That’s when mindfulness steps in, in all her beauty and reminds me to focus on my breathing, on the sunshine streaming through the window, on the sound of my fingers typing on the keys, on the here and now and suddenly those worries drift away and I am left content in the present.

Clair

NEXT UP: Be sure to check out the post tomorrow by Jessica E on http://livingwellwithepilepsy.com For the full schedule of bloggers visit the Participants gallery.

The big secret about potty training!

When a child turns two suddenly the word on every parents lips is potty training… if you think the pressure for your child to walk or talk first was intense… you have experienced nothing until you enter the unchartered, unsupervised waters of potty training.  At least there was no bodily fluids involved when learning to walk and talk and there was a health visitor checking their every skill level intently with surveys and check-ups, giving you tips and ideas.

No when it comes to potty training you really are alone and weirdly surrounded by parents and children who are apparently natural masters of the potty… you will hear ‘my child just decided one day he didn’t want to wear nappies anymore and potty trained himself’  ‘have you tried the three day technique, it’s amazing, I just don’t understand what all the fuss is about?’ ‘my little one was dry within a week of getting rid of nappies’ ‘I can’t wait to get rid of these expensive nappies’ ‘isn’t it awful the number of children still in nappies when they start school? Lazy parenting’.

That September school deadline looms over you, you know they NEED to be dry by then or you are going to be that lazy parent who expects the school to toilet train your child.  The media are pushing it, nappy companies are trying to squeeze every last penny out of you with pull ups and training pants and health visitors are weirdly no where to be found at this point and you feel like EVERYONE is judging you.

The reason 10% of children aren't dry by five...

The last two years have been the hardest two years of parenting for us. I have felt like a failure as a parent, like the only one who couldn’t teach their child the simple skill of using the toilet rather than their clothes to wee and poo in… there have been tears and temper tantrums from all parties involved… but then I found out something… 10% of children are not fully toilet trained at 5 years old… even more are not toilet trained at 4… so where are all these parents and why do we have so much pressure placed on us to achieve a goal which for 1 in 10 children is unachievable?

I am going to speak out for those 10% now, I hope that someone reads this and doesn’t feel like the failures that we did.

There are lots of reasons why children might not want to use the potty or toilet, for example, anxiety, fear or just plain stubbornness but what I am going to talk about is a medical reason which I now know affects 1 in 10 children aged 5 and which I feel every parent should be given information about. 

Even more importantly is that having started talking to women whose children have been exposed to anti-epileptic drugs in uterus, this seems even more common in this population of children.  Obviously there is no research, no reliable data to support this claim as with most of the impact of AEDs on unborn babies, it isn’t a priority for anyone to research at the moment.

If I had been told this could be a side effect of my medication would I have not had children? Definitely not, however if I had been told to watch for signs of an overactive bladder would I have approached potty training completely differently… absolutely and the last two years would have been very different.  Hindsight is a glorious thing and I will definitely be looking at potty training Benji very differently.

So what is an overactive bladder?

We now describe Riley’s bladder as a naughty bladder.  You may also hear this condition being called a ‘twitchy’ bladder.  When the bladder fills with urine these ‘naughty’ bladders send messages that the child needs the toilet before the bladder is fully full.  This means that the child will have a small bladder capacity and so will need to go to the toilet more frequently.  When the bladder squeezes this can be so strong that urine leaks out then and there, causing damp pants something we have been struggling with for years and meaning Riley has to change her clothes multiple times a day.

So the symptoms are:

- Frequent weeing (8 or more times a day)

- An urgent need to get to the toilet quickly

- Smaller bladder capacity

- Urinary tract infections

- Children will often try to stop the need to wee by squatting, sitting on an ankle or standing on tiptoes.

But with Riley these symptoms have only become clear in the last year or so as she has grown older and more able to communicate complex ideas.  Before that it was much more vague, she just didn’t seem to get potty training and yet she was meeting all her other milestones even ahead in things like imagination and emotional maturity.  She just had a lot of accidents and never told us when she needed a wee so we just thought she was being lazy or we were doing it wrong. 

We tried every reward we could think of, marbles in a jar, sticker charts, Velcro charts, a shop that she got coins towards every time she did a wee or poo.  We tried rewarding wees and poos, we tried rewarding staying dry instead. We bought a wobble watch to remind her to use the toilet every 30 minutes.  We got her to change her clothes herself after an accident to try to show her it is much easier to use the toilet.  Every time we introduced something new she improved but within two weeks she would slip back again it felt like taking three steps forward then two steps back and it was exhausting.

Finally I couldn’t take anymore I went to the drop in health visitor clinic and when I was told they were too busy to see me and the clinic was really only for babies I broke down in tears in the waiting room and finally got to see a health visitor.  She came and did a home visit and it quite quickly became clear we hadn’t done anything wrong and they weren’t able to really offer much more advice. Finally we got a referral to a paediatric urologist…

The moment everything changed

So I wrote everything down and went along to the appointment, the doctor was lovely talking to Riley as well as me.  She sat and listened to everything, my two years of a nightmare.  Then she smiled, a kind but knowing smile… she said to me I wish I could tell you that your child is unique however almost every parent who walks through that door tells me the same story.  She then explained to Riley and me that Riley had a naughty bladder and she said to me that Riley was particularly receptive for a 4 year old and so we could introduce an easy exercise to try to help.  But the main thing is that most children grow out of this problem… so we just have to wait.

Why did no one mention this before… why did no one say 1 in 10 children won’t be dry by school at it’s not the child or parent being lazy… it’s a medical thing that no one can change. Suddenly I looked on the whole situation differently.  We had just spent two years trying to get Riley dry in pants… I had even bought some ‘Dry like me’ pads but didn’t want to use them in case it made her lazy.

I left that appointment and went straight to the shops, I bought Riley a little bag, some nappy sacks and a packet of wipes and the next day I showed her the ‘Dry like me’ pads.  I explained to her that the pads would mean that when her bladder was naughty and squeezed some wee wee out that it would go in the pad, it wouldn’t smell, it wouldn’t make her clothes wet and all she had to do was change the pad herself when she went to the toilet.  This has been a game changer. Suddenly our life isn’t ruled by toilet training. Riley can manage her own pads and when to use the toilet 95% of the time, we still get the odd accident but it is so much more manageable.

My top tips for managing an overactive bladder:

Make sure your child is getting enough fluids, they should have over 1000mls of water at the age of four, that is quite a lot and it does take persistence to achieve.  This helps the bladder to fill and stretch and also stops the urine getting too concentrated which can make the ‘twitching’ worse.

Only allow your child to drink water.  Other drinks can again increase the twitching, caffeine is the worst, so tea, coffee, cola are definitely off limits.  Artificial colourings and flavourings can make bladders more ‘twitchy’ too so we always avoid these and even natural blackcurrant juice can have an impact.  With Riley we give her watered down apple juice as a treat as this tends to have the least impact.

Take your child to the toilet at regular intervals to try to do a wee especially when they are busy, a vibrating watch can make your child more independent with this.  It can be hard for them to differentiate between their bladder being naughty and squeezing and when they really do need to go to the toilet so when they are busy it is easy for them to forget.

Measure how much urine your child is producing when they wee. The problem suddenly became clear to us when Riley had a kidney scan and the radiographer said she only had 60mls of urine in her bladder and so couldn’t possibly need a wee even though Riley said she did.  I went home and started measuring each wee and suddenly realised she wasn’t ever producing more than 80mls of urine.  Her scan was sent back as normal so I had to go back to the GP to make it clear this wasn’t normal.

When they go to the toilet make sure they empty their whole bladder.  It can be good to encourage them to count while on the toilet and blow out.

If your child is struggling with poos, or doing poos in their pants, even if they go everyday they could be constipated.  We give Riley a small cup of prune juice each morning which seems to really help her.  Being a little bit constipated can put pressure on the bladder and make it even harder for a child to work out when they need a wee.

Don’t be afraid to use ‘Dry like me’ pads.  These are like sanitary pads and go in their pants.  If your child’s pants are constantly damp the pad will stop them having to change their clothes so often, will stop them being smelly and getting sore.  Forget trying to get them dry, just aim for them to be able to manage the problem independently.  It turns out schools aren’t so bothered about dryness, they just want the child to take responsibility for their toileting.

Try to encourage your child to try to hold their wee, the doctor said to Riley to try to count to 30 elephants when she feels she needs a wee and see if the urge to wee has gone.  That way you can train the bladder to fill and stretch a bit more, increasing its capacity.

Get the school onside, explain your child’s problem, make it clear they can’t wait for toilet breaks and if they are using pads show them that they have a little bag that contains everything they might need.  Our experience has been that the school has been amazing and really supportive.

Don’t worry about night time dryness, it may seem like everyone else’s children are out of nappies at night but if your child’s bladder can only hold 100mls of fluid in order to keep them dry at night your child will have to be getting up quite a lot to manage a dry night.  Also the twitching doesn’t stop at night so they may well leak without waking up.  Surely a goodnights sleep is more important for everyone.  Night time dryness is also reliant on the child producing enough of a hormone called vasopressin which your body needs to stop you making so much wee at night.

I really hope this blog helps another family struggling with toilet training feel less alone and empowers you to look at things differently.  I will be looking at the whole process very differently when I potty train Benji, I have learnt so much from the past two years about the amount of pressure we put on ourselves and our children to achieve developmental milestones. 

ERIC is a brilliant charity who have some brilliant resources for parents, children’s and school and who have been fantastic with giving us advice through their helpline so I would definitely encourage parents to contact them if you are struggling.

Running safety month and epilepsy

The clocks have turned back, the leaves are falling from the trees, it’s dark when I leave work and I’m scrapping the ice off the car in the morning… that can only mean one thing autumn most definitely has arrived.  I have six months left until the London Marathon and I need to keep my training on track but it’s hard in the cold and dark evenings. 

It turns out that November is running safety month so it seemed like a good opportunity to sit down and make sure I am safe out running.

I am very used to risk assessing activities, while I never let epilepsy stop me from living life to the full I am not one to go into anything without thinking about how I can make it as safe as possible.  That has quite possible saved me in the past, for example, when I had a seizure on a chair lift skiing, I had risk assessed for that very occurrence and so had a harness on and was strapped to the chair lift… had I not things could have ended very differently.

So safe running when you have epilepsy. First off visibility is crucial, if you have a seizure while crossing a road you want the cars to be able to see you and stop rather than run you over!  So the more visible the better.  I wear a bright running jacket and reflective hat with lights front and back and a light up arm band just to be safe.

I always plan my runs to be on roads which have a pavement and are well lit sticking to the more major roads, for some of my longer runs I know that the pavements are a little uneven so I add a head torch into the mix just to be extra safe.

Up until recently my husband and my strategy for help if I had a seizure was plan a route and an approximate time and if I wasn’t back by then send out the search party.  However with my longer runs taking over 2 hours (and getting longer as the marathon approaches) that means I could be lying in a ditch for quite a while!

Enter the Empatica embrace watch which I ordered nearly two years ago in a crowdfunding programme. It arrived a few weeks ago and has really boosted my running confidence.  It will detect if I have a seizure and call my husband and with the help of a location app like ‘Friend Locator’ he can come straight out and find me.

Confidence is a big part of running for me, my seizures started 12 years ago during running so there is a mental link there for me.  I also know that a big trigger for me is stress and anxiety so feeling confident that I am safe in turn will reduce the chance of me having a seizure.

Then just other general safety bits, try to cross busy roads at designated crossings and don't be tempted to just dash out in front of a car because you don't want to break your stride, jogging on the spot is a good way to keep moving while you wait for the lights to change.

Then of course like any runner I like to keep a record of my runs and progress.  I love the ‘Strava’ app for that, it really helps me stay motivated to keep going with my training and with the cold dark evenings really approaching that is going to be key to my successful training.

I hope that this blog helps other people with epilepsy feel more confident to get out and run as I really do feel running is so beneficial for everyone but even more so when you have a long term health condition.  It helps regulate mood, keeps you healthy and just builds self-confidence and self-esteem.  A great way to get started is to the 'couch to 5k' app, it builds up from very low activity to 5k runs in a matter of weeks and is really achievable. So get those running shoes on and hit the paths.

If you would like to support my London Marathon attempt and help people living with epilepsy you can sponsor me at www.justgiving.com/clair-cobbold/

SimpliSafe, a company that created a new type of home security for active people, is promoting National Runners Safety Month and I was inspired to share my own advice

Review ~ Empatica Embrace

Two years ago my husband bought me the empatica embrace watch as a Christmas present. It was a sort of crowdfunding scheme so it wasn’t as straight forward as buy the item and receive it in the post a couple of days later.  The plan was for it to be released in October 2015 so there was quite a wait and obviously the risk that it might never happen.  I read a lot about the watch and what they were trying to achieve.  To produce a product which would alert a carer to a seizure wherever the person was and also monitor stress levels (a particular trigger for me and I feel many people with epilepsy but something we can all develop strategies to have some control over), while also be comfortable to wear and look good at an affordable cost all made me feel this was a good thing to take a risk to support.

Two years ago...

Two years ago I was in a very different place with my epilepsy, I had had two tonic clonic seizures in three months, we had decided lamotrigine wasn’t going to be the drug to control my epilepsy and so I was weaning onto keppra.  We were also thinking about a second baby and not long after ordering the embrace we found out I was expecting in October 2015 so we were hopeful the embrace would arrive on time for baby’s arrival and a period where seizures are always more likely and with a vulnerable baby having an alarm always helps everyone’s confidence.

Unfortunately as with all the best made plans there were problems with development of the embrace, however this is a risk you take when you crowdfund something, and empatica did keep us up to date with what was going on throughout so I cannot fault them.  We carried on with our rather frumpy (and extremely expensive) alarm which only worked in the house.  By some miracle we started to realise that the leveteracitam seemed to be working and after 10 years of seizures, it appeared I was seizure free.

Celebrating one year seizure free

So how would any normal person celebrate a year’s seizure freedom but by signing up for the London Marathon!  I was a keen runner through school, it was my way of getting away from everything, however it was while running that my seizures began, in fact three of my first four seizures happened during or shortly after a training session.  So running the marathon seemed like the perfect way to show epilepsy that I had won and if I could raise a load of money for others with epilepsy in the process even better.

So I started running, I have two children so my main training time was after giving Benji his last feed so I would usually leave the house at 8pm, as my distances built I wouldn’t be getting home until 10pm and our strategy for knowing whether or not I had had a seizure… figure out how long the run should take and if I am not back by that time send a search party out… that could mean me lying there for 2 hours!  In the long summer days this worry was quite easy to push to the back of my mind I am not so sure it was so easy for my poor husband sitting at home waiting for me.

Introducing the embrace epilepsy monitor

But then autumn arrived, the cold, dark evenings set in and I started running in the dark… suddenly the worry of having a seizure and not being found for hours became a little more real and running became a little less appealing… but then what arrived… yes my embrace watch.

I cannot explain how excited I was, it turned up in an attractive package, and it looked amazing, not like a medical item but a stylish watch.  My kids loved the flashing lights and I couldn’t wait to set it up.  Now I am not going to lie set up took a while… however I am fairly sure that was my own fault… my phone memory was full, it hadn’t updated for months and hardly unsurprisingly the embrace wouldn’t connect. So I started clearing out my phone, running updates and then once that was done the embrace connected no problem.

All I can say is I love the embrace, it is comfortable, to the point where I don’t notice it when I sleep at night, I have a fit bit too and always found that quite uncomfortable to sleep in.  It looks good, no one has asked me ’what is that thing on my wrist?’ With my old alarm which looked like a lump of plastic anyone who popped round for a cup of tea would ask about it. I presume everyone just thinks it is a watch and the best bit is that it is a watch and I haven’t been able to wear a watch ever because the batteries die so quickly with me.

Seizure alert function

So the alarm function, as I said I haven’t had a convulsive seizure for over two years so I am unlikely to be able to test whether it actually works when you have a seizure.  However I have had a few false alarms. All have been for activities which I would say are similar to having a seizure so I think that shows it works rather than being a downside of the watch, my old alarm went off a lot more than this so I feel it is pretty accurate.

One false alarm was when I was scrubbing my little girls car seat and when it also went off while brushing my teeth I swapped it onto my non-dominant hand and since then there has only been one time it has alarmed and that was pushing my buggy along a very bumpy path… which pretty much makes your arm shake like it would during a seizure.

The one negative with the watch is that it needs to be charged for about an hour or so every day, this can be done from a computer or charger with a USB connection, I have started doing this in the evening at home or while at my desk if I am working so at a time when there are other people around.  There is also the fact that to contact family members there is going to be a monthly cost which as of yet is still to be announced, but I am really hoping it won't be too much.

The major test... running

Next was the real test… running… so on Tuesday I set off on my run, would it alarm? Would it stay connected to my phone? Well the answer is no it didn’t alarm and yes it did stay connected and the peace of mind this brings to me and my family is immense.  Over the next 6 months I am going to be scaling up my running in preparation for my marathon attempt.  I am going to be running in the dark for long periods of time on my own, and finally we have a full proof plan.  If I have a seizure the embrace will let my husband know and he can locate me with a simple find a friend location app.  That peace of mind is priceless and will help to make the next six months of training a lot less risky.

The final test was when I got home I had a shower wearing the embrace… a little scared of mixing water and electrics as I have put my phone in the wash many times. The embrace states it can be worn in the shower, rain and even for swimming (just not in salt water) and you know what it was absolutely fine after a shower.  Which is an amazing step forward as my old alarm was not water resistant so I was vulnerable when in the shower or even washing up as I was worried it would get splashed.

Stress monitoring

Finally the embrace also comes with the ‘Mate’ app, this is the basis of the stress monitoring system.  It is in the very early stages and currently just measures quality and quantity of sleep and basic activity information but even that is quite interesting to look at.  It is quite crude and the one thing I would say is that the step counter isn’t very accurate in day to day activities but seems to become more accurate if you go for a run.  However I can definitely see where the app is headed and I am really excited for future updates.  I hope that one day it will allow me to monitor my stress levels, to develop mindfulness strategies to control them, as I feel controlling these is key for me in remaining seizure free long term.

I can’t thank the empatica team enough for this amazing product, it is helping me to feel more confident when looking after my kids on my own or while out running and training for the marathon. I really do feel this is going to be life changing for so many people living with epilepsy.

To find out more about the embrace watch visit their website here.

Auction of Promises ~ Saturday 29th October 2016

Next year I am running the Virgin London Marathon to raise money for Epilepsy Action who help support the 600,000 people in the UK living with epilepsy.  They have helped me immensely over the last 12 years and I couldn't imagine running for anyone else.  This is a huge challenge for me as my seizures started while running but I am determined to beat epilepsy and complete my life's dream of running a marathon.  I am holding an auction of promises to help meet my fundraising target of £2000.  It would be fantastic if you could come along to the event and bring as many friend's as possible, alternatively if you can't make it we have some auction items to bid on before the event so please drop me an email with your bid to claircaxton@hotmail.com

Date: Saturday 29th October 2016
Time: 2pm - 4pm
Venue: Horizon, Assembly Walk, Carshalton, Surrey, SM5 1JH

Items in the auction open for pre-bids (send bid by email to claircaxton@hotmail.com)

2 hours in a professional recording studio with an award winning producer and leaving with a professional quality recording on CD or online
CV and interview advice by a professional recruitment consultant
Horse transport (up to 100miles) and groom for a day (excluding plating tails)
Linked in profile copywrite
5 hours of babysitting in the Redhill/Reigate area
Improvers ski lesson by professional ski instructor (at Brentwood ski slope, transport can be included)
3 hours of base guitar lessons
Cooking tutorial from a professional chef culminating in a restaurant quality 3 course meal in your own home
An amazing made to order cake from Little Blossoms Cakery (truly works of art)
Vintage China for an event for 30 people perfect for a baby shower or hen party
Fudge factory experience
Pony experience - spend half a day learning to care for and then ride a pony (children under 8 years)

Auction items available on the day only:

Transport to and from the airport
Beginners knitting lesson
Family meal including desert delivered hot to your door
1 to 1 make up lesson by professional make up artist
Juggling lesson
2 hours of ironing
Kids rainy day craft box
frozen slow cooker throw bags
2 hours of gardening
Pet portrait
Meal for four people cooked in your own home
5 beginner piano lessons

We are also going to have a raffle on the day and raffle prizes so far include:

Family ticket to Godstone Farm
Afternoon tea for 2 at Edibles in Banstead
2 person ticket to Bockett's Farm
Garson's Farm gift voucher
Woodcote Green garden centre gift voucher
Free bowling at Tolworth Bowl
Mini canvas by the talented artist Jenny Greenland
£10 dry cleaning voucher for Banstead
1/2 case of wine
30 minute go karting session in Crawley
And much much more...

Also on the day there will a cake sale with tea and coffee, crafts for the children, face painting and Riley will be singing a song to make everyone smile!

If you aren't able to come along to the event but would still like to support my marathon attempt anything you can donate would be greatly appreciated.  My just giving page is:

www.justgiving.com/clair-cobbold

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.

My 2017 London Marathon Challenge really begins!

With my place confirmed on the Epilepsy Action London Marathon team 2017 now seems to be a good time a step up both my training and fundraising as both are a huge challenge but one I am looking forward to.

So I want to start by sharing why running the London Marathon is such a huge challenge for me. I have always wanted to run the marathon I guess it's one of my biggest life goals. At school I did long distance running, something very few people were keen on! I ran 1500m at all the school competitions not because I was an amazing runner but more because noone else wanted to and I used to run 10k in sub 1 hour so I wasn't a bad runner and I enjoyed it!

However I had my first big tonic-clonic seizure, 12 years ago, walking home after a training run, I had my second seizure while running with my athletics club and I had my forth seizure on a treadmill. I quickly lost confidence in running, put the challenge of running a marathon to the back of my mind along with the idea of driving. That diagnosis of epilepsy really knocked my confidence but it was Epilepsy Action who gave me hope that I could live a full life.

In the past 10 years my volunteering with Epilepsy Action has given me a purpose, I feel like my epilepsy diagnosis has given me an opportunity to help others, that something positive has come from it.

By giving epilepsy presentations to care providers, businesses and other groups I have helped make our world a more understanding place for people with epilepsy. By helping at events I have met so many amazing people effected by epilepsy, their stories have inspired me to do more with my life and I hope my story has helped others to. By getting involved in campaigning I hope I have helped make a small change to the bigger system that means others with epilepsy won't have to go through some of the more negative experiences I have had to fight my way through.

So now I want to achieve the life goal epilepsy made me place on the shelf so many years ago, I am going to run the 2017 London Marathon and I couldn't imagine running it for anyone else other than Epilepsy Action.

Running the marathon is a big enough challenge in itself but the fundraising goal I have is also a pretty big goal for me too, and something I have never really done before.

So I ask you my friends to help me with this, it doesn't have to be by giving money (although if you can spare a little that would be amazing, you can visit my just giving page here) just words of encouragement to get out there running when it's cold and wet would be amazing. I'll also be holding cake sales and hopefully an auction of promises so it would be great to see you at them, just watch this space.

So the challenge begins, here we go!

SUDEP ~ the other side of the Epilim debate

So a few weeks ago I was invited along to share my story at the Epilepsy Action pregnancy symposium in Wales. It was an amazing opportunity for me and I feel my story really helped highlight the need for better support for women with epilepsy throughout pregnancy.

It was fantastic to see so many health professionals from across Wales interested in making women with epilepsy have more positive birth experiences. I was really surprised to see what a good level of specialist support they seem to have across Wales with epilepsy nurses attending anti natal clinics to give support. Yet in our area just South of London there was next to no specialist input.

But the day also highlighted to me a darker side of epilepsy and I have been umming and arghing about how to write this post. Reading this post about the importance of bringing epilepsy and death out of the shadows has kick started me into writing this.

Risks of Epilim (Sodium Valporate)

We have all heard the awful stories of women having been on Epilim during pregnancy and not being informed of the risks to their baby. Of the babies born with birth defects and neurodevelopmental problems.  The day really did highlight the importance of informing women of these risks which is brilliant but it also addressed the other side of the coin... the fact that epilepsy can kill.

The reason I am writing this is because women should be given all the information when making a choice about medication during pregnancy.

I have heard people say Epilim should be band in women of child baring age but this is why it shouldn't, because every woman should be given all the information then given specialist support to come to the right decision for them.

Gender gap in treatment of generalised epilepsy

Epilim is the most effective treatment for generalised epilepsy (things like Juvenile Myoclonic Epilepsy). If a man walks into an epilepsy clinic with a generalised epilepsy syndrome he'd be put on Epilim as a first line drug. If it's a young girl or women they would try other drugs, drugs less likely to work, it turns out keppra is one of the most effective drugs aside of Epilim so it's very positive that it is appearing to be fairly safe in pregnancy.

Real Story ~ to raise awareness

They told a story which really hit home to me of a women who had been on Epilim for JME throughout childhood and it had controlled her seizures completely. She then wanted to start a family and made the difficult decision to change to what was then seen as the safest medication in pregnancy, lamotrigine. She started to have a few seizures again but got through the pregnancy and had a healthy baby.

After the birth she saw her neurologist and they discussed if she wanted to go back on Epilim but because she wanted a second child she decided to stay on Lamotrigine and live with the seizures. A few months later her husband found her blue on the bathroom floor, he was unable to resuscitate her, at her inquest the family were told she had died from SUDEP.

SUDEP ~ the information everyone should have

Seizure control is the best way to reduce SUDEP so sadly if this woman had chosen to restart Epilim her child would probably still have a mother. It's a horrible truth but one that is not spoken about enough.

The risk of SUDEP increases in the first year after birth, it makes sense and yet I never really considered it. Lack of sleep, hormonal changes, forgetting medication as we are running around after our little person, all increase our risk of seizures and thus our risk of SUDEP.

We say women should have all the information about epilepsy drugs in pregnancy to make a decision and I think that is totally right.  I just wonder whether this women was given all the information about SUDEP to add into that decision.

Epilim does carry a fairly substantial risk to a baby in pregnancy (you can find more information here) but uncontrolled epilepsy increases the mothers risk of SUDEP and that needs to be considered too (you can find more information on SUDEP here).

Lets face it not all women want to have children, women may be happy to take the risk of Epilim or maybe adoption is a better option for them but at the end of the day what women need is ALL the information and a supportive knowledgeable health professional to discuss it with so they can make there own informed decision about their health and the health of their baby.

Epilepsy is a difficult condition to get your head around in fact when a group of health professionals were asked whether they would rather have a diagnosis of epilepsy, diabetes or asthma, epilepsy was the least popular and yet there is an 70% chance that by taking a tablet twice a day you will never have another seizure again... but maybe it's all these extremely difficult topics that the condition throws up because at the end of the day weighing up your own risk of death against your babies risk of being harmed is a horrible and really tough decision to make.

We are amazing women, fighting tough battles, we deserve all the information and a supportive team of health professionals around us. Let's fight for that together.

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

All Wales Epilepsy and Pregnancy Symposium, Cardiff ~ Wednesday 20th April 2016

This looks like a fantastic event for health professionals and will hopefully help build understanding of epilepsy and pregnancy and what extra care women with epilepsy need on their journey.

I also feel honoured that I have been invited along to the day to share my own experiences with health professionals and I'm really looking forward to it.

The day is going to look at:

Epilepsy, diagnosis and management, seizure types, treatment

Teratogenicity of anti epileptic drugs, valproate and learning disability

Pre-conceptual counselling, contraception and fertility

Management of pregnant women with epilepsy - a confidential enquiry

Epilepsy Care in Pregnancy

UK Epilepsy and Pregnancy Register

Ante natal care

Labour, delivery and post delivery

Safety issues

Personal experience of epilepsy and pregnancy

So looks like an excellent day. If you are a health professional and would like to attend you can find out more about the event and book your free place here.

I'll be writing about the event afterwards so watch this space!

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.