Thursday 30 January 2014

Epilepsy in Eastenders

Epilepsy is getting onto the TV, over the past few years David Platt in Hollyoads, Steph Dean in Hollyoaks, Andrew Robinson in Neighbours and now Nancy Carter in Eastenders...

I don't watch Eastenders but it's great that epilepsy is getting into the story lines, a big step in raising awareness.

But why is there always a but.... there was definitely a mixed response on social media... many people praised the way it was addressed but there were some responses on Twitter which highlighted the challenges we face to stamp out the stigma.

Young epilepsy have highlighted some of the responses on Twitter:

Sunday 26 January 2014

Play Dough - Recipes and Fun

I haven't blogged about 'things to do on a rainy day' for a long time.  I want to highlight this fantastic website:

It's an amazing website they name pretty much sums it up, it's about activities which help kids learn... but it is so much more than that, it's packed full of creative and fun ideas of things to do with your kids.

So I will continue to share ideas from the site as I find them, but for now I'm going to share my mum's recipe for play dough and then a recipe for play dough with a twist from the learning4kids website...

Easy recipe for making play doughPLAY DOUGH

1 cup plain flour
1/2 cup salt
1 tbsp oil
2 tsp cream of tartar
food colouring
1 cup of hot water

Basically just mix it all up and then when it has become a thick dough, kneed it until it is a smooth dough perfect for little hands.


2 Cups Cornflour (corn starch)
1 Cup Hair Conditioner
Food Colouring
*Extra Cornflour to add if mixture is still a little sticky*
Place hair conditioner into a medium bowl and mix the food colouring through the conditioner. Add 1 cup of cornflour and stir.  Then add the last cup of cornflour to the mixture. Constantly stir the mixture until it begins to form a thick blob. Turn the play dough out onto a clean surface and knead into a smooth ball with your hands.  Add more cornflour if the play dough is sticky.

When you have your perfect playdough you can add some plastic shape cutters, a rolling pin, dried pasta - all great accompaniments to the fun.  

You can also add glitter and scented oil to the playdough itself, cinnamon is great or maybe lavender...

Enjoy Together :)

Thursday 23 January 2014

Levetiracetam taken in Pregnancy Found Safe in Preschool Child Development

A new study finds that the epilepsy drug levetiracetam appears not to be associated with thinking, movement and language problems for preschool children born to mothers who took the drug during pregnancy, although the drug valproate was associated with some difficulties in preschoolers. The study is published in the January 8, 2013, online issue of Neurology®, the medical journal of the American Academy of Neurology.

"These results are heartening, as the use of levetiracetam has increased in recent years, but there has been limited information on its effect on the thinking, movement and language abilities of children. However this is the first study to look at the effects of levetiracetam and further research is needed before we can be certain there are no associations. It is very important that women do not stop taking their medication before speaking to their healthcare professional," said study author Rebekah Shallcross, PhD, of the University of Liverpool in the United Kingdom.

The study involved 53 children exposed to levetiracetam, 44 children whose mothers took valproate and 151 children whose mothers did not have epilepsy and did not take any drugs during pregnancy. The children were age three to four-and-a-half. Tests evaluated their development in areas such as thinking, movement and language abilities.

The study found that children exposed to levetiracetam did not differ from children not exposed to epilepsy drugs on any scale administered. Children who were exposed to valproate, however, scored an average of 16 points lower on movement tests, 10 points lower on expressive language tests and six points lower on language comprehension measures than those exposed to levetiracetam.

In a corresponding editorial, Pavel Klein, MB, BChir, of the Mid-Atlantic Epilepsy and Sleep Center in Bethesda, Md., said, "Importantly, valproate is used more commonly for treatment of neuropsychiatric diseases such as bipolar affective disorder or migraines, than for epilepsy. In 2005 to 2007, only 19 percent of the 926,000 valproate prescriptions given to women in the U.S. between the ages of 15 and 44 years were for seizures. There is virtually no information about the drug's effect on babies born to mothers taking the drug for these disorders." Klein noted that valproate doses used in these disorders are usually lower than for epilepsy.

Chickenpox - another things ticked off the list!

Well Riley's now had chickenpox... 
On Sunday morning, the morning of her dedication, she woke up with what looked like a sty and as she’d had loads of sties over the last month or so I didn’t think any more of it.  But while we were at the church 3 little spots came up on her forehead and then when I changed her she had lots more spots under her nappy and a few on her back and tummy!
So far she’s been very good, she hasn’t itched them too much and although she’s had a few moans at times but considering she must be itchy and feeling a bit yuck she is surprisingly happy.  She hasn't had many spots, a few have blistered but they're all healing up now, so we should be able to get out and about soon.
She seems to have got off quite lightly I just hope she's had it bad enough that she doesn't get it again!

Monday 20 January 2014

Riley's Dedication - Sunday 19th January 2014

We had Riley’s dedication on Sunday.  It was a truly wonderful day, exactly how we wanted it to be.  I think the fact that we put so much thought into it meant it was more meaningful than having her christened would have been because the promises we all made were true.
The church is really like a big family and Riley’s dedication made me realise that even more.  The support we had on the day and how welcoming everyone was to all our friends and family made me feel so lucky to be part of the church.
I hope that I can help bring Riley up to know God and I know that I have the support of everyone in the church to do that.  More importantly while Rich doesn't believe in God the church has made him feel so welcome and I feel like he supports me in telling her about God, before I felt we were on opposite sides, now I feel we are working together to give her a balanced view so she can make her own decision.
I’m not going to go on about god, not because I don’t believe, but because I don’t believe in pushing my beliefs on others.  But I am proud to say I am part of Horizon church and that I have a faith in God and his plan for me.  I feel blessed for all I have and although I have epilepsy (which does suck at times!) I feel blessed that I am able to do so much to help others through living with it.
I’ll post some photos of her dedication when I have some!

Riley at the Stables!

Riley loves the outside, no matter what she's doing or what the weather's doing she just loves being outside :) so I thought I'd share these photos... you could call it child labour but I like to think of it more as she's learning the responsibility of looking after a pony before she starts riding one!

Friday 17 January 2014

Brain Injury books launched this week!

They're available now!  The books which my work have been working so hard on are now available to buy on The Children's Trust website.  They are free with just a £3.50 postage and packing (£1.50 for each additional book). 

Wednesday 15 January 2014

A fantastic step in the right direction!

I got a phone call a couple of days ago from my GP surgery.  They were looking through all the notes of people with epilepsy at the surgery... which included me.

They asked me when my last seizure was and then went onto ask if I knew the risks of anti-epileptic meds in pregnancy... how fantastic is that! Having my GP contact me to ask me about it is a huge step to making sure women with epilepsy are given the right information.

I don't know whether it had anything to do with the campaign, I'd like to think it did but either way it can only be a positive step and hopefully it's not just my GP that is helping to make sure women with epilepsy feel supported in starting a family.

Wednesday 8 January 2014

Once upon a time there was a little robot called Tim-Tron...

Cartoon of Tim-Tron, a robot with a dog

I thought I'd write a bit about a new book which will be available from The Children's Trust (where I work) from next week... it is called Heads Up Tim-Tron and is about a little robot who bangs his head.  The aim is to help explain brain injury to younger children in a colourful and interesting way.

The story was written by my manager Ian and has beautiful illustrations :) there is also an audio read along track by Richard Hammond.  It will be available for just the cost of postage and packing so hopefully it will reach as many families as possible.

You can read more about how Tim-Tron was created in a blog written by Scope:

It is one of 3 publications that The Children's Trust are releasing next week, the second one is a Medi-Kidz comic book which aims to explain acquired brain injury to older children.

There is an epilepsy Medi-Kidz comic already which is available for free from Epilepsy Action (click on the comic to order a copy)...

The final book is a parents handbook which will be packed full of all the most key information about childhood brain injury.

All the books will be available on Monday and I'll post the link to the site when it's up and running :)

Epilepsy Awareness Training with a twist!

Today I went to Maidstone to do the Epilepsy Awareness training.  It was a very different situation to any of the other presentations I have done. It was a bit of a mission getting there!  A good test for my bus and train skills!  I had to get the bus to drop Riley at nursery (she screamed when I left her - think the break for Christmas got her out of the routine - but she did have a good day in the end!).  Then luckily a family friend dropped me at Redhill station, then got the train from Redhill to Tonbridge, Tonbridge to Maidstone, then a bus to the school (and the bus before broke down so the bus was packed!)... but it's good proof you can be independent without a driving licence, just a bit more of a challenge!

The training was at a special school for children and young people with additional behavioural and learning needs.  I did a couple of sessions talking to some of the kids at the school, it was a very different audience to what I'm used to giving presentations to... I know the second one I did was much better than the first which I was a bit frustrated with myself over, I think it just took me a little while to put the information into a 10 minute easy to understand talk.  The kids asked some really great questions which was a good sign and one girl talked really openly to me about her brother who has epilepsy, so if nothing else I know I helped her.

I then did the usual awareness training with 70 members of staff... that is by far the biggest group I have ever spoken too!!!  I think it went quite well, I was a little nervous but not as much as I thought I would be.

I think it all went ok and the main thing is I hope today I have been able to raise a bit more awareness of epilepsy :)

Epilepsy Action

Sunday 5 January 2014

Splish Splosh Splash!

Riley loves puddles :) paddling in puddles is a great way to get out and about on a wet day!  All you need is a good pair of wellies (Riley has my old pair from when I was little) and a paddle suit (Riley's was £3.50 at an NCT sale).
Then just find a good puddles and jump!  I think we are very lucky, Riley is a very hardy little person, she just loves the outdoors and so doesn't mind being out in the wind and rain.  Makes the winter months much easier to cope with as you can get out and about just making sure we take lots of warm dry clothes and waterproofs with us :)

Friday 3 January 2014

Our adventure to America!

So with Christmas over and we’ve been out and bought our ski stuff it seems like our holiday is just around the corner (which I guess it is!).  In a way having the seizure has made me think about the implications of having a seizure skiing – so maybe it was a good thing.
I will not let epilepsy rule my life, it certainly won’t stop me skiing… but what’s the point in taking risks you can avoid.  So if I have a seizure skiing it’s only like falling over.  Yes I might hurt myself but I’m going to rent a helmet, which is a sensible move anyway, Michael Schumacher’s recent accident proves they can save your life.
So the most dangerous bit is if I were to have a seizure on a chair lift… I’m not going to pretend this is my idea, so here’s a link to the blog!
So we’ve bought all the bits needed and it looks good.  So that’s that worry sorted :)
I sent Alpine Meadows a tweet asking if they have any rules surrounding people with epilepsy skiing and they tweeted back “You are able to ski at Alpine – we have no policy.  See you on the slopes!” so that’s that worry sorted :)
Then there was the issue of travel insurance.  Well I’ve looked on insure and go who have a form for if you have epilepsy that is easy to use and relevant.  They don’t consider seizures which don’t affect your consciousness, they don’t even ask for them.  So if I don’t have any more tonic-clonic seizures between now and then it will cost an extra £40 and if I have 1-2 in the 4 weeks before we go they will still cover me for winter sports for an extra £80.  So although that’s quite a lot of money, it’s not excessive and most importantly they will insure me :) so that’s that worry sorted.
So now I can just be excited about going! Yay!

Thursday 2 January 2014

Riley's Dedication - Sunday 19th January 2014

In a couple of weeks time Riley is having her dedication at our church.  We have given our pastor a bit of a challenge I think, we spent 2 hours with him discussing everything!  So basically because Rich doesn’t believe- that poses the first issue… and then Nikki and Dan also don’t believe but we want them to be God parents - which poses a second issue!
On one hand I don’t want any of them to make promises they don’t believe in, but at the same time I don’t want to take away from the fact that I want Riley to be part of Horizon to know God.  I feel I believe in God, have a relationship with God and I want Riley to share in that, I want to be able to share that with Riley.
I guess the first thing I feel being part of Horizon has done is because everyone accepts Rich even though he doesn’t believe I don’t feel like I’m fighting him in helping Riley know God, I feel like he respects that part of my life now, is happy to embrace it.  I think Rich’s past experiences of religion have been so negative, being accepted by Horizon means a lot to him, makes him see things more positively.
I also feel like being part of Horizon means I’m not alone in sharing my beliefs with Riley I have the church to help Riley make a decision about her beliefs in God too.
As for Nikki and Dan being god parents – if anything were to happen to Rich and me, we hope Nikki and Dan would look after her and as such I would want them to allow Riley to know God so she could make a decision as to what she believes.  So I guess what I want isn’t for them to stand there and say they believe in God, but to be able to say we will help Riley to know God, encourage her to be part of the church.
But I know putting all that into words that can be said during a service is pretty tricky.  I feel very lucky to have a pastor who looks out for us so much and the fact that so much effort is being put in to make sure it totally meaningful to us and so will be very special.