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.