Thursday 29 August 2013

Words for Life

I just wanted to share a website that I think is fab. It's basically a book website which revolves around the importance of developing a child's language skills.  It is split into milestones and then ways in which you can encourage development for each age group.  Basically full of exciting ideas to keep you busy and help your baby develop :)

While doing some market research for my work I came across a few parent blogs that I thought were great.  This one reviews books (going along with my belief that reading to your child is really important) but on top of that she makes "book bites"... food based on the books she reads!  It's such a good idea and something I will definately be doing with Riley when she's a bit bigger and wants to help cook rather than just want the food and just doesn't understand why it has to be cooked first!

Wednesday 28 August 2013

Our Weekend Away in Somerset

Last weekend we had a fantastic weekend away.  We visited Rich's god mother in Somerset and then went down to Bournemouth to visit one of Rich's friends and play in the huge sandpit (the beach!) and the massive swimming pool (the sea!).  It was great to get away as a family and we did lots of things, saw Bison, played in 2 soft play places and explored a castle :)

But... yes there is a but... Riley scared me beyond anything I could imagine.  We were all sitting eating dinner, Riley was on her booster seat attached to a chair.  She must have suddenly kicked the table because she went over backwards on her chair onto the slate floor!  The chair broke and she screamed, but within 5minutes she was happy again pointing out the dogs and crawling round the garden... but I couldn't believe she was ok.  I have to admit I spent the whole weekend worrying that she could have a bleed in her brain or a neck fracture.  It just happened the next day she was teething really badly and was really unsettled.  I kept thinking we should go to A&E but with it being an hour and half round trip and knowing they would probably do scans and stuff I knew in my heart of hearts I was over reacting.

But it was at that point I realised I was a city person, I may not think so because we don't live in central London but at the end of the day our closest A&E is 15minutes away and if it had happened at home we would have been straight there even if she seemed fine.  That makes me feel safe, I couldn't cope being in the middle of nowhere especially with the added fact public transport is so limited.  It is lovely to get away for a few days but I'm always a little relieved to be home.

But the most important thing is Riley is fine, no damage done, just terrified me.  I will leave you with a photo of Riley on Bournemouth beach... just to prove she was ok :)

Tuesday 20 August 2013

Epilepsy Research Findings

 These are the findings of the piece of research I was interviewed for quite a while ago...

 ‘Gaining an Understanding of the Experience of Pregnancy in Women with Epilepsy'


Sincerest thanks to all of you who participated in this research. It was a privilege to hear your experiences and from my analysis of your accounts I have generated four themes:

Concerns about Motherhood 

* You expressed having concerns during your pregnancies about how their epilepsy and/ or its treatment would affect your ability to be a mother. These concerns related to fears of harming the baby through seizures and/or medication.
* Despite these concerns, many of you also expressed your joy at becoming a mother and did not feel different for having epilepsy.
* Many of you had been advised about what you should avoid doing after the baby was born, (e.g. not bathing the baby alone). Some of you struggled with this, and related the ability to do certain tasks with what it is to be a mother.
* Some of you discussed your concerns they had about how your epilepsy would impact on labour and birth- some felt that a seizure would stop you from consciously experiencing your own birth or being able to give birth naturally.

Experience of Services 

* For some of you, the experience of being pregnant and having epilepsy meant that some professionals who were not involved in the care of your epilepsy either overly focussed upon epilepsy or did not want to engage in any conversations about epilepsy.
* You also described positive experiences of services when they took into account your needs and wishes. Negative experiences tended to be when fewer choices were available and when decisions about care were made without your input.

Living with Risk 

* For many of you taking medication during pregnancy, the risks associated with medication were thought about by weighing them up against the risks posed by uncontrolled seizures.
* For some of you the experience of being pregnant had created changes in how you thought about your epilepsy. Many of you described being ‘more wary of it now’ but also described ‘carrying on’ with life as usual.

Accessing Information 

* It was felt that there was a lack of understanding amongst healthcare professionals about epilepsy and the issues raised with pregnancy. Many of you described having to take the lead on their own care needing to chase things up yourselves. Many of you also felt that you did not feel particularly informed about pregnancy and epilepsy and that information was hard to come by.


* Like many pregnant women, pregnant women with epilepsy can face a number of challenges during their pregnancy. However, these challenges were exacerbated in this group of women and many of these women also faced a number of additional challenges during their pregnancy.
* Women described their anxieties about being harming the baby, either through a seizure or through use of antiepileptic drugs.
* Women often found themselves to be the messenger between different professionals and many women felt that most health professionals had a very limited understanding of epilepsy.
* Information about what to expect during pregnancy was not always widely available.
* Risk of harming the baby is a significant concern for many women with epilepsy during pregnancy and therefore health professionals should help women to understand these risks in a supportive manner.
* Health professionals should recognise the emotional impact of managing a pregnancy alongside epilepsy and women should be given the opportunity to talk about their feelings throughout their pregnancies.
* Health care professionals should have more training about epilepsy and so that they are able to have a greater understanding of the needs of the women that they see and provide more useful and accurate information.
* Any advice offered to women with epilepsy during pregnancy should be individually tailored.
* Women need more information about the challenges of pregnancy and epilepsy. Epilepsy nurses well place for providing some of this information to be shared with women.

Sharing the Findings

I am presenting these findings at a conference which will be attended by Midwives, Health visitors and other health care professionals. I am also intending to publish the findings as a research paper and will be sharing the findings with the Epilepsy Nurses in York and with Midwifery Services in Humber. I also intend to provide a summary of the findings to Epilepsy Action.

Once again, thank you very much for participating in this research. Your time and contributions were valued immensely.

Best wishes,
Stephanie Boardman.

Monday 19 August 2013

Interesting Research into Lamotrigine and Pregnancy

More Proactive Management of Drug Levels Needed During First Trimester of Pregnancy and in Women on Lamotrigine

Drs. Battino and colleagues from a large consortium in Europe present important new data in the July 22nd early view of the journal Epilepsia. The investigators assessed prospectively 3,806 pregnancies of 3,451 women with epilepsy taking part in the EURAP, an international AED and pregnancy registry.

They analyzed this group to assess seizure control dose adjustment during pregnancy in women who are taking carbamazepine, lamotrigine, phenobarbital or valproate as their only drug. 

The investigators found that the following: 

  • 66.6% of women remain seizure free throughout pregnancy.
  • Generalized tonic-clonic seizures occurred in 15.2% of the pregnancies.
  • Women with idiopathic generalized epilepsies (73.6%) were more likely to remain seizure free than women with localization-related epilepsy (59.5%).
  • Worsening in seizure control from the first, the second or third trimesters occurred in almost 16% of pregnancies.
  • The AED dose was increased during pregnancy in 26%, and a second AED added to initial monotherapy in 2.6% of all pregnancies.
  • Seizures were more likely to occur in the first trimester in pregnancies with an increased drug load (35%) than in pregnancies without an increased drug load.
  • Compared with other monotherapies, pregnancies exposed to lamotrigine were less likely to be seizure free (58.2%), had more generalized tonic-clonic seizures (21.1%), and a greater likelihood of deterioration in seizure control from the first to second or third trimesters.
  • The mean dose increase from first to third trimester was 26% for lamotrigine, 5% for carbamazepine, 11% for phenobarbital, and 6% for valproate.
  • There were 21 cases of status epilepticus, 10 of which were convulsive, none with maternal mortality and only one with a subsequent stillbirth.

The investigators concluded that: 

  • The majority of women remain seizure free throughout pregnancy.
  • However, one needs to have a more proactive approach to adjusting the dose of antiepileptic drugs in pregnancies, particularly for women in the first trimester and for those exposed to lamotrigine, to reduce the risk of deterioration in seizure control.

by Joseph I. Sirven, MD
Last Reviewed: 8/14/2013

Adapting my Buggy Breaks ~ Remap

I was being interviewed for some research yesterday and during the discussion we got onto the customised breaks I have on my buggy.  I don't think I have mentioned much about them and for me they were one of the things that gave me the biggest piece of mind.  A charity called Remap did them for me, they are an amazing charity.

They work through a nationwide network of dedicated volunteers who use their ingenuity and skills to help people with disabilities to achieve much-desired independence in some aspect of their lives, or to enjoy leisure opportunities previously closed to them.

With my bugggy, I chose whichever buggy I wanted, in my case a Quinny (chosing a buggy in general as a parent is pretty tricky!) and a volunteer from the charity came and had a look at it and then took it away to think up a way the breaks could be put on.  Then he came back a few weeks later with a prototype which didn't effect the buggy at all to see if I thought it was ok, would work and was happy for the changes they would need to do to the buggy.

I then said it was fantastic and he took it away again for a couple more weeks and it came back with the breaks all sorted.  They are an ingenious use of bungy cords and bike breaks and the only way they had to alter the buggy was to drill 2 small holes in the handles at the sides.  If I took it all off no-one would really know it was ever there.  Although it is a made at home with one off design it looks really proffesional and you wouldn't look at the buggy and think who attached all that tat to it.  It is amazing, everyone thinks so and actually it was really useful because I didn't need to worry about faffing about with breaks if I stopped on a hill.

The only thing I do have to do is occasionally change the break cables as they rub on a piece of metal and frey but that is it and I have had to change the Quinny tyre innertubes a few times because they get punctures so nothing is perfect.  It is also worth noting that it does invalidate the guarantee as it is an adaption to the buggy.

I couldn't find a buggy which had any sort of dead break and talking to others they have said they could only find very expensive buggies with dead breaks.  It only cost me the cost of the materials and volunteers petrol which worked out at about £40 and we gave them a donation.  It was amazing, I managed to have the buggy of my choice with the amazing breaks which have made such a huge difference to my confidence getting out and about. I can't thank them enough.

Friday 16 August 2013

Running the London Marathon... One Day?

Another bit of that diary was about when I had my 24hr EEG and an MRI at The National Epilepsy Society.  Talking to the guy who set up my EEG he had so much faith it could all be controlled.  We spoke about my running.  I don't know if I have ever said about my running, before my Epilepsy I used to run a lot, I wasn't a national runner or anything by I ran 10k in under an hour which I think is ok!  I always planned to run the Marathon, but when I started having my seizures during running I pretty much stopped all together.

The guy putting on my EEG said one day I will run the marathon and when I do to contact him and he'd put it in their newsletter!  Well now I am not so reliant on being seizure free to do my job, maybe that is something I will consider... if I have a seizure running it would suck but it wouldn't be the end of the world anymore... it would be quite a challenge to face but if I did manage to get to the London Marathon I would be so proud of myself.

Would be running it for Epilepsy Action, to help with the pregnancy and becoming a mum campaign... it's something I am so passionate about.  Being a Mum is amazing and epilepsy shouldn't stop anyone.

Opening up about the past ~ finding my diary

Riley is asleep in her little snug on the floor... wow!  It won't last long but I have something I want to share...

Today while I was trying to find my hospital appointment letter (I am useless sometimes!) I found a diary I wrote during the really rough time in my Epilepsy story.

It was in 2010, I was still under my old neurologist who was completely useless (even another consultant said so!) and he was giving me no support and basically leaving all the decisions down to me...  it was the point at which I read about the possibility that the contraceptive pill can increase Lamotrigine levels and my dose was so high I was considering stopping the pill or trying another drug but I wanted advice and my neurologist just left the decisions up to me with no information...

(see next post for information on Lamotrigine and the combined contraceptive pill

It was the time at which I was pushing to be seen by an Epilepsy nurse... I didn't relise how bad I was feeling at that time and how hard I had to work to be seen by someone other than my current neurologist...

I wrote a list of all my worries and I didn't remember how anxious I was after that seizure until I read that.  How because it wasn't during exercise I felt even more like it could happen at anytime, anywhere.  I was struggling with the limitations on my work, the inability to drive and worrying about ever being able to start a family.

It's funny because everytime I have a neurology appointment now I get tearful and  reading that I can see why, I guess I feel much happier and confident most of the time now, I try not to think about what could happen.  But there are moments where things catch up with me, usually when I am tired and reading this diary it was a time when everything got on top of me. 

It goes on to the first appointment I had in London, I felt really guilty (and still do to some extent) being refered to London, I felt like my epilepsy isn't that bad and I was wasting a specialists time and stopping someone else seeing her who needed it more.  I only wanted to see an Epilepsy Nurse, not be referred to such a specialist.  But then I can see that things improved so much, everything about my epilepsy started to make sense and I understood more about it and felt like the specialist was making the decisions more.  I can't thank The National Neuro hospital enough and the specialist who sees me.

Another bit was the beginning of my pregnancy, the bit after the seizure, it made me realise that was a really tough part of my life, I had so many worries, I was so worried about miscarriage especially after the seizure.  I also had all the otheer worries of becoming a mum and then on top of that all the worries of becoming a mum with epilepsy.  Reading back on it, it has made me realise why I am doing all this, my blog, the pregnancy diaries, I hope I can make other womens experiences of becoming a mum with epilepsy a little bit easier.

The Combined Pill and Lamotrigine

From my last post I wanted to write a bit more about how the contraceptive pill could interact with Lamotrigine.  It doesn't quite follow the trend of a lot of AEDs where the AED can reduce the effectiveness of the pill, with Lamotrigine the interaction can be both ways...

It's really important to talk to your consultant if you are on the contraceptive pill and Lamotrigine, it doesn't mean you have to stop the pill necessarily, just need to be aware of what's going on.  Here's some information from Epilepsy Action about The Combined Contraceptive Pill and a link to more information from them on Contraceptive Advice generally with Lamotrigine...

Combined oral contraceptive pill (the Pill), contraceptive patches and vaginal rings

Research on a small group of women has shown the following.

The Pill, contraceptive patches and vaginal rings may reduce the amount of lamotrigine in your bloodstream. This would make you more at risk of having seizures. If you take lamotrigine and want to take the Pill, or use contraceptive patches or vaginal rings, it’s advisable to discuss this further with your doctor or epilepsy specialist. They may need to increase your dosage of lamotrigine.

Lamotrigine may make the Pill, contraceptive patches and vaginal rings work less well. This would make you more at risk of an unplanned pregnancy. Your doctor might also advise you to use condoms as well, until they can be sure that the Pill, contraceptive patches or vaginal rings would prevent you from getting pregnant. The doctor can check this by giving you blood tests at certain times of the month. The blood tests would show if the contraception has stopped you from ovulating (releasing an egg). This would mean that you shouldn’t get pregnant.

Here's a link to information relating to other AEDs and contraception:

Something to consider...

Thursday 15 August 2013

Riley's summer... so far

It’s been a while since I’ve posted anything!  Very disorganised of me, time just seems to have flown by and with spending the whole day on the computer at work I haven’t wanted to spend much time on the computer at home, especially when the sun is shining as it has been for the last few weeks.

We have had some very busy weekends recently, been to the open east festival, which was amazing, the Olympic park has a fantastic water and sand area as well as a huge adventure playground, definitely worth a visit.  We’ve seen lots of friends, at BBQs and visiting exciting places like Wealde and Downland museum, which was amazing, Riley loved the fish and ducks fighting for the bread in the pond!  

Riley is growing up so fast, she hasn’t started walking yet but is a super fast crawler and has learnt to get up and down stairs and was climbing up the steps in the playground and going down the slide on her own!  I will share some pictures of our summer so far, which shows just how big she is getting.

And to finish a family photo! (Wealde and Downland Museum is fab)

Focal Seizures ~ Still there :(

So today I had a small focal seizure, nothing major, it didn't even effect my vision, just an intense feeling of fear.

There is no proper medical evidence to say that these definately are seizures... I might be making a fuss about nothing... all we can go on are a few points that hint at them being seizures...

I have some abnormal brain activity in a small area of my brain on a 24hour EEG (but as I have said before someone with Epilepsy can have a perfectly normal EEG unless they are having a seizure and likewise someone who will never have a seizure can have abnormal brain activity so it is not a definative answer, unless I actually had one of these little 'episodes' while attached to an EEG we will never know for sure)
They seem to have got less frequant and intense as my medication has increased (but then epilepsy can change on it's own with time...)
One day when I had a major seizure I had 3 of these 'episodes' in the morning leading up to it
When I was having my big seizures every month I was having lots of these 'episodes'

So I think they probably are something to do with it, it's just I doubt myself, they are so small and don't effect me but at the same time they are a sign that it's not 100% controlled and it makes me panic a bit at the time.  Then when I get home in the evening and think about it, tell Rich I just begin to feel a bit disappointed, I always think it's gone away, when I started this new job I thought maybe I won't have anymore because I'm no longer thinking about it and worrying...

But there you go, it happened, I never really expect them to go away, I've always had them and if this is all I have for the rest of my life I will be very lucky... it just makes me worried something more major might be brewing...

The other issue is medication.  My Lamotrigine can't go any higher so the only option to try to control them is to try something else... that involves a lot of risk and probably more seizures and especially with Riley I can't risk that.  So now that I don't have to worry about it in relatiton to my job I think I will just continue and as time goes by without a major seizure my confidence increases, it's been nearly 2 years now, touch wood, I've only had 1 period longer than this without one before...

Thursday 8 August 2013

Research Project ~ parents experiences

Examining the experiences of mothers with epilepsy and their partners

Teesside University, UK

About the study:
The aim of this study is to explore the individual experiences of mothers with epilepsy. It will identify if having epilepsy affects their lives and has implications for child care. Partners’ experiences are also considered.

When will this study be recruiting?
May to August 2013

What will participants be asked to do?
Women will be asked to take part in a one hour face-to-face or telephone interview that will be recorded by the researcher. The interview will be written up and analysed by the researcher. The interview will cover topics such as child care, going outside of the home, bathing your child and so on.

Who can take part?
This research is open to women living in the UK. To be eligible to take part, you should:
•    have been diagnosed with epilepsy before becoming pregnant for the first time
•    have at least one child under the age of ten years
If you have a partner, they will also be asked to take part in this study, if they wish.

Who is conducting the research?
Rebecca Healey, a MSC Health Psychology student at Teesside University.

Who has reviewed this study?
This study has been reviewed and approved by the ethics committee board at Teesside University.

If you are interested in taking part in this study please contact Rebecca

Thursday 1 August 2013

Panorama Reflections

I know this is a bit delayed but I just received an email about it which reminded me I wanted to post something...

After the BBC one Panorama programme "The Truth about Pills and Pregnancy" there has definitely been a mixed response which has scared a lot of women... this piece is going to be really long but I hope you find it helpful (and please please please if you get bored scroll to the bottom and read the final paragraph).

Professor Helen Cross,The Prince of Wales’s Chair of Childhood Epilepsy at Young Epilepsy said

“There is ongoing research about the effect of sodium valproate on unborn children, and medical professionals have a duty to make patients aware of this. However, sodium valproate remains a very effective antiepileptic drug. Women with epilepsy who are considering starting a family should speak to their consultant to discuss their medication prior to pregnancy.”

You can watch the BBC programme here:

Epilepsy Actions says:

Epilepsy Action believes that sodium valproate should not be the first-line treatment for epilepsy in women of child bearing potential, or in girls who will need treatment into their child bearing years. This is due to the significantly higher risk of birth malformations associated with this epilepsy medicine.
Epilepsy Action believes that for some women, sodium valproate at the lowest effective dose will be the most appropriate medicine to use. For example when:
  • a suitable alternative treatment is not available,
  • alternative medicines fail to establish seizure control,
  • treatment with others medicines was associated with significant side effects ,
  • the risk of uncontrolled seizures outweighs the potential teratogenic risks,
  • the woman opts for treatment with sodium valproate after discussing all the risks and benefits, and after being counselled about contraception, conception and pregnancy.
Pregnant women who are already taking sodium valproate should continue to take their medicine as normal and seek advice from their specialist. Sudden reduction or withdrawal of epilepsy medicine can lead to uncontrolled seizures (increasing the risk of sudden unexpected death in epilepsy – SUDEP). Furthermore, because the unborn baby has already been exposed to sodium valproate, abandoning medication might not reduce the risk posed to the unborn baby.
Research Projects say:
Research in the UK suggests that children born to mothers who took an epilepsy medicine during pregnancy are six to ten times more likely to have a neurodevelopmental disorder. The research found that children born to mothers who took sodium valproate (Epilim) were more likely to develop autism, attention deficit hyperactivity disorder (ADHD) or dyspraxia.

Out of 528 who took part in the study, around half of the women had epilepsy. All but 34 of them took epilepsy medicines during pregnancy. These medicines included carbamazepine (Tegretol), lamotrigine (Lamictal) and sodium valproate (Epilim).
Overall, the children exposed to Epilim alone were six times more likely to have neurodevelopmental problems. The risk was even higher in children exposed to Epilim as well as another epilepsy drugs (when the mother is taking several medicines). These children were 10 times more likely to be diagnosed with one of the above conditions.
Of the data available for 415 of the children, 19 of them had been diagnosed with developmental problems by the age of six. 12 of them had autism, four had dyspraxia, three had ADHD and one child had both autism and ADHD. The study also showed that dosage levels affect the likelihood of a disorder developing.
This study by Dr Rebecca Bromley of the Department of Molecular and Clinical Pharmacology, University of Liverpool, was relatively small and this is a topic that requires more research. Dr Bromley said: “Children exposed to sodium valproate during pregnancy, may be at an increased risk of developmental problems. However it is important to note that not every child is affected. If a family is concerned about the development of a child exposed to a medication during pregnancy (for example, they are worried about their speech, communication or social skills) they should get advice from their GP.”
This research follows a similar study into the effects of Epilim on IQ levels.
Researchers in the US first carried out tests on children born to mothers who had taken the medicine during pregnancy in 2009. The results led to a warning by the US health watchdog about the potential risks of valproate during pregnancy.
The new study is a follow up on the same children. It has shown that the IQ of the children is seven to ten points lower than children whose mothers had used one of three other epilepsy medicines. These are carbamazepine, lamotrigine and phenytoin.
According to the research, the dose of valproate also affected the child’s IQ score. It found that the higher the dosage, the greater the difference in IQ. Kimford Meador at Emory University, Georgia, conducted the study.
He said: “IQ at age six is strongly predictive of adult IQ and school performance, so our research suggests that valproate use during pregnancy is likely to have long-term negative effects on a child’s IQ and other cognitive abilities.”
Dr Meador added: “Given that many women do not have the option of stopping medication during pregnancy, more research in this area is urgently needed.”
Nicole Crosby-McKenna, women’s officer at Epilepsy Action said: “The majority of women with epilepsy who are taking sodium valproate have healthy children. However, these findings highlight the importance of monitoring women with epilepsy throughout pregnancy.
“Mothers who took sodium valproate in pregnancy should be supported to carefully monitor the development of their children. If their child is not achieving expected milestones, or they are worried about their development, they should speak to their health visitor or doctor. Early access to interventions (such as speech and language therapy, where required) could really help a child’s development and learning.”
Due to the small scale of the studies, more research is needed into the long-term effects of Epilim on pregnancy. Dr Bromley said that she hopes to continue the research in larger studies.
Nicole concludes: “Despite any worrying evidence from these studies, it is vital that women do not stop taking their epilepsy medicines without seeking advice from their doctors.”
Me again...

Sorry for all the information, but thought that it's important to give as much info as possible as for me the more I know the more I feel able to make informed decisions.

Basically it is important to know all the facts and all your options so discussing this with your specialist before starting a family is the best option.  But if you do find your pregnant don't panic, don't stop taking your medication - contact your specialist as soon as possible to get advice based on your indivdual situation.

I would definitely recommend reading the whole of the pregnancy diaries but if you are just looking for information about sodium valporate then here is a piece from the diaries about it specifically:

The reason I say it is best to read the whole of the pregnancy diaries is that all this sounds scary but having a baby is so amazing and being a mum for me is the most incredible experience of my life.  I love Riley more than anything and it is so important to remember you can be a mum whether or not you have epilepsy it just takes a little bit more planning.