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.
Wednesday, 16 November 2016
Sunday, 13 November 2016
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.
Tuesday, 8 November 2016
Thursday, 3 November 2016
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.
Sunday, 16 October 2016
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 email@example.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
2 hours of ironing
Kids rainy day craft box
frozen slow cooker throw bags
2 hours of gardening
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:
Monday, 15 August 2016
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.
Thursday, 11 August 2016
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.
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.
Wednesday, 29 June 2016
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!
Wednesday, 18 May 2016
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.
Monday, 16 May 2016
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
Wednesday, 30 March 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
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!
Saturday, 26 March 2016
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.
Saturday, 19 March 2016
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.
You can find out more about the risks of epilepsy medications here.
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.
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.
Saturday, 12 March 2016
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.
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
Monday, 7 March 2016
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.
|Clair had a difficult experience of pregnancy and brith with Riley|
|Kim Morley won the RCM South of England Midwife of the Year 2016 award|
|Kim helped Clair gain the confidence |
to have her second baby, Benji
|Riley and Benji|