Tuesday, 20 January 2015

How do you explain epilepsy to a 2 year old?

I can’t believe that just a few months ago when Riley turned 2 we were worried she wasn't able to say much.  Now she talks and talks and can say pretty much anything she wants, I think of all the developmental milestones her speech has to me been the most amazing.  It’s just so nice to be able to walk down the road and have a conversation about what we can see and what we are going to do.

But now she is able to understand so much it has got me thinking maybe I need to start looking at how I can explain to her about my epilepsy and what she needs to do if I have a seizure.  It’s such a difficult thing to judge, so far I have never had a seizure while she has been there so if she saw me have a seizure it could really scare her.  Knowing what to do could really help but I don’t want to scare her by telling her too much or something she doesn't really understand.

Is 2 just too young? How do I go about explaining something so complicated to her in a simple way?  These are all the questions I have started to ask myself.  My mum bought me a lovely little book for Christmas which I think is where I am going to start.  It is called ‘Epilepsy Book for Kids’ by Layla Reid who is seven and whose mum has epilepsy.

This then got me thinking – everyone’s epilepsy is so different and everyone’s situation is different what would be lovely would be a personalised book for Riley, about my epilepsy – in fact maybe this is something I could actually look into – could I develop personalised books for children whose parents have epilepsy…

So I am going to do some research into it and maybe in the future I can take it further.  In the meantime if you have any advice about explaining epilepsy to young children I’d love to hear it – send me an email to claircaxton@hotmail.com

Tuesday, 23 December 2014

Would you like to share your pregnancy story and your experiences of being a parent with epilepsy?

Read the pregnancy diaries onlineEpilepsy Action is building on the Pregnancy Diaries which Riley and me were involved in.  They’d love to hear from new people.

It was an amazing project for me to be involved in.  Nicole who put the whole thing together is so approachable and it really helped me to feel that I was helping making a difference to other women.  I felt very alone during my pregnancy and I didn’t want anyone else to feel like that if I could help it.

You can read the pregnancy diaries here.

So now it’s your chance to get involved.  Drop Nicole an email to find out more campaigns@epilepsy.org.uk

And watch this space, I’ll keep everyone updated as the project moves forward in 2015.

Saturday, 20 December 2014

Adoption rejection

So I told you before we were going to try to adopt, well we are rather gutted as we were rejected based on Riley’s age.  Apparently they like a big age gap between a natural child and adopted child.  Also there second reason was that there are very few children in Surrey who need to be adopted.

We are obviously gutted but it just frustrates me, surely adoption is something which should be a national scheme.  Surely it makes sense that in somewhere like where we live there are more families looking for children than children looking for families, it’s an affluent area… but elsewhere in more deprived areas I am sure it is the other way round.  It seems crazy to me.

As for them wanting what’s best for Riley I don’t really buy it… I know people with children Riley’s age who are fostering. Surely having a different child living with you every few months is far more ‘disruptive’ than adopting a permanent brother or sister.

They also told us it was to do with statistics showing that adopting a sibling close in age leads to adoptions breaking down in teenage years… I would like to think that we will bring our child/children up in a stable and loving enough environment that a comment from Riley that her brother or sister isn’t a real brother or sister because they are adopted wouldn’t bring our family to its knees.  Let’s face it, I think you have to cope with more in life than that.   We’d talk it out and set the record straight.

But anyway so it is our council won’t move forward with our application.  Everyone we speak to thinks it’s ridiculous but there is really nothing more we can do for now.  You can’t argue with them.

Wednesday, 19 November 2014

Managing Mood ~ getting back to running

I wanted to write a little bit about mood.  It’s such a difficult thing to judge which I guess is one reason why mental health problems are so difficult to cope with.

As far as my epilepsy is concerned sometimes my brain cuts out, I fall to the floor turn blue and have convulsions… that’s not normal… that needs treating medically.  But when it comes to our mood, what is normal?  We all have our down days and sometimes the day’s role together to form weeks.  But when do we need to get help… and what should that help be?

The thing with epilepsy is it impacts on our mood because it impacts on how we live our lives; we live with an increased level of risk and a certain amount of judgement from others.  Even seizures can be confused for low mood and vice versa.

Since stopping Lamotrigine (which is a mood stabiliser) I have become much more aware of the ups and downs of my mood.  At first it scared me, was I depressed, was this normal?  But after a chat with my sister I am coming to realise that ups and downs in mood aren’t bad, they help make life more worth living.

And because to me this is new it is a chance for me to think about how I can manage my mood, make me feel more in control of it and so get the best of both worlds… the ability to feel the highs and lows of life but at the same time not letting the lows get on top of me.

So I have started running again, it’s how I got through my teenage years and it is doing wonders for me now.  I try to get out three times a week for about 30 minutes and started by doing ‘Couch to 5k’ which I would definitely recommend.  

You wouldn’t believe how much better it makes me feel, how positive I feel not just straight after the run but the next day or so too.  I feel like it’s what gives me control over my mood.  It’s a weird situation because I first started having seizures while I was running so it holds a bit of fear too.  

I’m also looking into mindfulness training too; I think that would really help me as anxiety is something I can struggle with.  I am not saying techniques like exercise and mindfulness can cure all mental health problems and I don’t want this to seem like I am criticising anyone.  It’s just as I weaned off the Lamotrigine and started Keppra I have become much more aware of my mood and this is my way of responding to that.  

Me with my tetrathlon team when I was at school and used to do soooo much exercise before I started having seizures running!

Tuesday, 11 November 2014


One of the people who was presenting at the Epilepsy Action weekend was tap2tag.

Tap2Tag is a new way to carry your emergency medical information.  It uses NFC technology which most new phones now have.  All you have to do is tap your mobile phone against the bracelet or keyring and it will bring up the persons name and an emergency message on the mobile phone.

This simple video says it all:

This is a fantastic product which could make a huge difference to people with epilepsy.  They are also about to release a young child's size wrist band which I will get for Riley so she can wear one in case I have seizure and she runs off.

Monday, 10 November 2014

Potty Training

We have been trying potty training for a couple of weeks but it has not really happened.  She doesn't really ask to use the toilet so it has meant the only way to stop her having lots of accidents is to keep sitting her on the toilet.  I think she's then just got fed up and her behaviour has started to deteriorate.

I'm not sure whether she has full bladder control and either way she doesn't seem to want to use the potty so we have decided it is best just to leave it for a few months and come back to it.  It's Christmas coming up and we just want to enjoy that time together as a family.  She's not even 2 and a half yet, potty training can wait, for now we just want to enjoy time as a family.  I don't want it to become a big thing.

The one thing I would say is that you are given so much information about breastfeeding and weaning etc etc but when it comes to potty training there isn't that much guidance, people just sort of say "you'll know when they're ready" which hasn't really been what we have found.  There is no real way of going about it... no advice as to what to expect.  But anyway it hasn't happened first time around, but never mind, as Riley's book says "all potty stars need practice - no-one's perfect straight away!"