34 weeks ~ birth plan's in place

I cannot thank Kim the epilepsy midwife enough for all she has done to get us to this point.  It has been her support which has given us the confidence to stand our ground and push for what we want.  We are now finally at a point where we have a clear plan which is agreed by both the consultant midwife and obstetric consultant at the hospital.

Location

We wanted to be in the birthing unit by due to the size of the rooms we have agreed it would probably be better to be up on the ward but they are going to move the bed and medical equipment to the side of the room and put mats and a birth ball out.  My labour will be managed by the midwife unless anything goes wrong.  I am going to have intermittent monitoring of the baby so I don't have to be strapped to equipment.  No IV - something we have thought long and hard about but due to me never having been in status it seems like an unnecessary intervention.

Pain relief

Mindfulness and moving around using different positions as well as a TENS machine which I found fantastic last time.  Then gas and air as needed. If I need any intervention such as forceps or a c section I will have a spinal instead.

Discharge

We're planning to be discharged reasonably quickly and they have said we can have a private room so that Rich can stay with me, so it's not the end of the world if I have to be in for one night.

It's just been nice to have it acknowledged by both the consultant midwife and the consultant that what happened last time was pretty traumatic for both Rich and me.  The fact they understand that I know my condition the best and are listening to what I want is refreshing and helping me feel more confident and less frightened about this labour.

As far as I am concerned, I am still seizure free and well.  There are no concerns at the moment with more or baby and baby has their head down and seems to be getting into the right position.  So all is looking positive.

Don't get me wrong, I know a lot can change in the next 6 weeks, but all we can do is prepare as best we can and go with things as they happen.

Epilepsy & Me ~ BBC Three

Last night BBC Three showed a fantastic documentary as part of their ‘Defying the Label’ season.

The documentary looked at what it was like to live as young person with epilepsy.  It particularly addressed the hidden nature of epilepsy.  Something which I think can be difficult for us to come to terms with but also those around us.

What happens when people can’t see your disability? It’s hidden and can strike at any time, without warning – when you’re walking down the street, in a classroom, at a party or on a date.

The programme looked at four young people with epilepsy and covered a wide range of topics in a short time.

It was also filmed mainly at Young Epilepsy, a place which I know very well from working there for two years and so it brought back a lot of memories of that time of my life too.

Loss of independence

One of the biggest things for me was how closely supervised these young people are.  How can you grow up and lead an independent life when you can never be left alone?

I feel blessed my family have never been overprotective of me.  Even when my seizures were new and much more regular they still allowed me to go off to university.  They must have worried about me, but they never let that show and I am forever thankful to them for that.  I think sometimes we don’t give the people around us the benefit they so much deserve.

I also think we should encourage family and friends to speak out more about their own experiences of the person’s epilepsy.  So many of the problems for people with epilepsy is being limited from doing things because people don’t think it’s safe or don’t know how to reduce the risks. How can we ever change this if the amazing people who support us don’t feel they have a way to talk about how they allow the person they love so much to live life to the full.

Big decisions

The programme also looked at 14-year-old Thomas who was having tests to see if his epilepsy was due to a newly discovered brain tumour.  After many tests it appeared that the tumour was the most probable cause of his seizures – he now has to decide whether to go for the brain surgery which has a 70% chance of curing his epilepsy but risks leaving him with speech and memory problems or to live with his seizures.  

These are big decisions for people so young to face and part of me feels lucky that surgery has never been an option for me – could I make a decision that big?

Stress, anxiety and excitement as triggers

One of the people I related to most was 24 year old Amy, she obviously had no idea when she had had a seizure, the way she was when she came round from her seizures rung true for me, that being confused but not sure why.

She was desperate to live an independent life and was looking for a long term placement, she found The Meath in Godalming and set her heart on it.  Her seizures then got worse so her supervision increased… somehow I could relate to her, doctors put her increased seizures down to her medications but I’m not so sure, I think often the emotional triggers of seizures are overlooked because we can’t fully understand them.  But I know my focal seizures are triggered by stress, anxiety, excitement, it’s a hard thing to accept because all those feelings are part of life, we need to feel them but what do we do if by feeling these intense emotions we end up triggering a seizure?

Driving

The only area I felt the programme didn't do justice too was the issue of driving.  And that is a biggy for so many people with epilepsy.

21 year old Olivia hadn't had a seizure for four years and wanted to learn to drive.  I really felt for her as it seemed like a lot of the people around her weren't supportive of her learning to drive. 

They repeatedly said you needed to be seizure free for three years before you could learn to drive and I think they needed to be clearer about his as the general rule is one year seizure free.  I don’t know whether it was her family who had told her 3 years or apparently there are rare cases where due to being on controlled medication you can’t drive but it was a little misleading and I think will lead members of the public to question people with epilepsy driving after only a year, something we really don’t need.

I really felt for Olivia because it seemed like her family didn't have much faith in her abilities.  It made me feel so blessed to have always had my family fighting for my independence, be it carrying on with the activities I loved so much, horse riding, skiing and swimming to getting married and having a baby.  

It’s a scary thing letting a person you care about so much take risks, part of you wants to keep the safe and as a parent now I can understand that all the more.  But for my family it's always been a case of how can we do this but with the least risk, be it wearing a helmet and body protector riding or getting an alarm when I had our baby.  I can’t thank my family enough for their attitude towards my epilepsy, they are amazing.

If you are looking for information on driving rules Epilepsy Action has some great information here.

You can also watch the programme on BBC iplayer here until 10th September 2015.  Definitely well worth a watch - inspirational young people showing us how to live life to the full with epilepsy.

31 weeks ~ not long to go now!

So less than two months until my due date and things are coming together.  So just wanted to give a little bit of an update.

Community Midwife Appointment

This week I had another appointment with the community midwife.  Again she was lovely and very understanding.  I had decided that I was going to ask if there was any chance of me having the baby in the midwife lead birthing unit at Epsom Hospital... if you don't ask you don't get! I was all ready for her to say no when to my surprise she said that was where she was thinking would be the best place for us!  It's early days as she can't grant us this but we should be seeing the consultant midwife soon who will be able to grant us this and then it's just a matter of running it past the doctors... ok so maybe not so easy but the fact is it's not been ruled out! Yay! Fingers crossed nothing goes wrong between now and when baby arrives.

I am however measuring quite big and so need to have another scan to check the baby isn't too big.  I am fairly sure it is all fluid (especially as my placenta was so big last time) and also the baby is lying right in the middle of my tummy.  But you never know until you scan, but hopefully it's not going to be a huge baby!  I think we're going to take Riley along to the scan which I think she will love :)

Now I am really working on my Mindfulness and trying to practice that as much as I can so that I am prepared for labour as best I can.  I am also finding it useful in all areas of my life so it's definitely something I would recommend to anyone.

Getting ready for baby!

We have bought a new buggy, a Phil and Teds Navigator 2 which has a dead break built into it.  The problem was that I wouldn't have been able to attach a buggy board to my Quinny because of the breaks so that is now up for sale - if you are interested drop me an email as would really like it to go to someone with epilepsy if possible.

We have also ordered a Moses basket this time - I think it will be worth it as I can then have the baby next to me in bed whereas last time I had to get up to pick the baby up out of the cot.  It might be a waste of money but if it gives us any chance of some sleep I'll pay it!

We've also started decorating the babies room, we have bought a matching curtain, blanket and lamp shade set which has made the room seem more like a nursery and less like a spare dumping room!   Our lovely friend has also given us a lovely throw for the sofa so it is really starting to feel like a baby's room.

Riley's chosen the babies first clothes so all that is really left to do is to get all the old clothes down from the loft and wash them.

Riley's growing up

I can't believe how grown up Riley is becoming.  She is going to be doing an extra couple of half days at pre-school from September.  I am really making the most of the time I am spending with her at the moment as I know it's not going to be as easy when the baby arrives.  I am really looking forward to being on Mat leave so that I can spend a bit more time with her. 

She's now learnt how to use my phone now and can call my mum or Rich if I have a seizure - I feel like we have got to a point now where if I had a seizure when Riley was around she'd be able to cope with it and know what to do.  I find that amazing, that at only three she is able to take on so much responsibility.  She is amazing and I feel so lucky to have such an amazing little girl.

28 weeks ~ appointments and birth plans

So I'm 29 weeks pregnant and starting to think about my birthing plan.  It's a weird situation to be in because in my last pregnancy I didn't feel like I had any choices and so didn't see the point in writing a plan - I just went along with what the doctors wanted.

This time I feel like I have a voice, I feel like I have choices to make and most importantly I feel like I am being given all the information I need to make those decisions.

Over the last 2 weeks I have had quite a few appointments and the amazing thing is they have all been really positive and I really feel like I now have a pretty good idea of what I would like to happen during my labour.

Anaesthetist appointment

The first appointment I had was with the anaesthetist at Epsom hospital - all I can say is she was amazing.  Having looked through my notes she said she didn't blame me that I didn't want another epidural after what happened last time.  She also said that I coped so well with the pain last time she didn't feel I would need one this time anyway.

She also said that hopefully this baby won't get stuck like Riley did as second babies tend to get into the right position easier so hopefully I won't end up needing a forceps delivery.  Also I hope to be able to move around more this time so that will help the baby's position.

So the plan is that if I need to have a c section or forceps delivery this time they will just do a spinal - which is a smaller needle in a different part of my spine.

I also found out that if I had a seizure they wouldn't give me either an epidural or spinal as they are both seizure inducing, if I needed a c section due to seizures they would put me under general anaesthetic anyway.

Community midwife

I finally met my community midwife and she was lovely.  She really seemed to understand that a natural labour would be the best thing for me.  She said that there is now a consultant midwife at Epsom hospital so I am going to go and see her to write my birth plan rather than the reflections midwife at the other hospital who I really didn't find very helpful last time.

When I said I felt like I had failed because I had ended up co-sleeping with Riley in hospital she said no you didn't fail, we failed you... that meant a lot hearing that she understood.

I also had my anti D injection as I'm rhesus negative so that was another thing ticked off the list this week.

Epilepsy specialist at The National Neurology Hospital, London

We saw my epilepsy specialist and she was really pleased with how I am doing and feels that the Keppra is working. I've had no seizures for eight months and even the idea of driving again soon was brought up! I'm not going to get my hopes up and I think even if I am still seizure free in November I won't be rushing to get my licence back.  But who knows when the baby is sleeping better if I am still seizure free it will be amazing to be able to drive myself places in the evenings, I'd have a little bit of freedom back.

We discussed IVs during labour and she said she liked women with epilepsy to have one during labour but could understand why I didn't really want one after last time.  She has left it quite open for us to discuss it further with the epilepsy midwife and Epsom hospital.  She is also supportive of the fact from an epilepsy point of view I should be discharged as soon as possible and if not Rich needs to stay with me.

She also agreed that Clobazam probably wasn't a good option for me during labour as I didn't react well to it last time and my seizures seem better controlled this time anyway.

Epilepsy midwife at Royal Hampshire Hospital, Winchester

This was the most amazing appointment of them all.  She is an amazing woman who makes us feel empowered to make this pregnancy and labour what we want and not what the doctors want.

The main things we discussed were:
1. This issue of an IV - a recent study found a 1-2% chance of having a seizure during labour but failed to look at whether there were any causative factors for these seizures.  So with such a low risk and with my epilepsy well controlled she doesn't feel I need an IV.  I have never been in status and if I do have a seizure during labour I wouldn't need emergency medication unless it lasted longer than 5 minutes as the baby wouldn't be affected by a self resolving seizure.

2. She feels if everything goes well I should be discharged home as soon as possible and if we do need to stay for any reason Rich must be allowed to stay to ensure the baby is safe.

3. Eating and drinking  during labour - last time I wasn't allowed to drink for 12 hours due to them putting the epidural in - this time because I don't want an epidural I should be able to drink during labour.  I just remember being so thirsty last time, if I can avoid that it would be fantastic.

4. Hypnobirthing can trigger seizures... she also says it can make you feel less in control, something I really struggled with last time.  She was really positive about mindfulness though and so I think I am just going to continue to concentrate on mindfulness exercises to help me through labour - I'll talk more about this in another blog as it is something which is really helping me to feel more in control of everything.

Then she started asking me if I had thought about how I wanted the baby to be monitored during labour and also what I want to happen about delivering the placenta after the baby as these are also things I have a choice over. 

This is a strange thing for me to get my head around firstly because the period after delivering Riley was the worst part for me but also because last time I didn't get any of these choices.  So I'm going to go away and have a read up on my options.

It was just so good to be planning my labour as a positive experience where I can use my mindfulness training to deal with whatever happens and be treated like a 'normal' woman.

So I really feel like my birth plan is coming together.  I feel like we have so much support now from my specialists and midwifes in Epsom that hopefully the doctors will back down and realise I've though all this through and I'm not being irresponsible.

It may sound strange but I sort of feel that I need to win this battle not just to give me the best chance of having the birth I want but also to give women with epilepsy everywhere the confidence to stand up to doctors when they over medicalise things so that women are less likely to go through what I went through last time.

The best bit is the epilepsy midwife wants to write our story as a case study which would really help highlight everything which I feel I have had to fight so hard for but which I hope in future won't be such a struggle for women with epilepsy.

 

Riley turns three ~ our amazing little girl is growing up.

I am sorry it has been a while since I last wrote a blog – the honest truth is that from a pregnancy point of view not a lot has been going on and life has just got really busy.  Just the way I like it, I have been left in peace by all the health professionals aside from a phone call from a midwife at our local hospital to tell me the doctors didn't write anything in their notes following my appointment at 18 weeks!  I have been doing really well, still completely seizure free which is a miracle!  I can feel the baby moving every day and feel fine in myself aside from having quite a lot of acid reflux and some Braxton Hicks contractions – but that’s just normal pregnancy things and all part of the experience!

The most eventful thing to happen is Riley turned three – I think she had a pretty good birthday!  We went to Hobbledown farm park on her birthday itself and then had a Peter Rabbit party at our house at the weekend.  She also seems to love her presents – she was adamant she wanted a camera and a scooter for her birthday and is definitely making the most of both.  We've had some very interesting photos and she hasn't been in her buggy since her birthday and is scooting everywhere which is fantastic (although maybe not for the wear on her shoes which she uses as a break!).

I'm almost in my third trimester now and the next few weeks hold a lot of appointments so I will be busy blogging about them as and when they happen.  I guess now is the time for me to start writing my birth plan and making sure things are in place to try to make this labour less traumatic.  So in the next few weeks I am seeing the anaesthetist, my epilepsy consultant, the epilepsy midwife in Winchester and the community midwife.  I will also need to have my whooping cough vaccine and Anti D injections – so lots going on.  But I am hoping that by the time I am 30 weeks I will have made a plan with my specialists, and I can then make appointments to see the doctors and reflections midwife at the local hospital to lay down exactly what we want to happen during labour.

But for now I will leave you with some photos from Riley’s birthday.  I can’t believe how grown up she is getting.  She is so excited about her brother or sister coming and hugs and kisses my bump and sits and talks to it, it is amazing to watch and brings me close to tears.  Riley Roo you are amazing, we are very lucky to have such a wonderful little girl.  Happy 3^rd Birthday.

The pressure of being seizure free...

I have been totally seizure free for 6 months now which is the longest I have ever been seizure free for since I was diagnosed 10 years ago.  Now don't get me wrong I am really happy but part of me is terrified too...

The seed for this blog was planted by a friend of mine who has really inspired me to talk out about something which I find difficult to put into words and which I sometimes feel guilty for but here goes – I just hope this makes sense and that I don’t upset anyone.  

For many years I have felt in a difficult place, my seizures don’t happen, daily, weekly or even monthly but my seizures have never fully gone away, in fact at one stage I went over two years without a major seizure and then had one for no apparent reason.  I often find myself feeling bad that sometimes I get down about my epilepsy because so many people have it so much worse.

But talking to my friend made me realise something…  now don’t get me wrong I would never want to live with more regular seizures but in having seizures so irregularly sometimes I feel I can’t be completely honest about how I am feeling around people whose seizures are so much worse.  

I often feel bad posting on epilepsy forums about my problems because they often involve issues people whose epilepsy is so severe can only dream of facing.  When your seizures are under control you have to get on with your life – live it to the full or you are wasting that time but the epilepsy is never gone, it is always there in the background, always posing a risk. 

This weekend I mentioned this to my husband and he totally understood what I was saying.  He said it’s like if you have seizures all the time someone is constantly hitting you with a bat which hurts and stops you being able to get on with things.  But when your epilepsy is controlled it’s like you are being followed around by someone holding a bat who might hit you at any moment for no good reason – you can’t forget it’s there and you always have that worry with you.

He also told me about an experiment carried out in the 1960s where monkeys received electric foot shocks that were signalled by a preceding tone.  Monkeys were in pairs, with one in each pair able to press a lever to avoid the shocks.   The other monkey in the pair could not press the lever and so received all the foot shocks that were delivered.

The monkeys who had control over the lever quickly began to show signs of stress such as gastric ulcers and some even died.  The monkeys who received shocks but could not try to avoid them, remained healthy although I’m thinking probably weren't particularly happy!

They concluded that the shocks themselves were not severely stressful as the monkeys who had no control over the shocks showed little sign of stress; the critical factor was the stress associated with trying to avoid the shocks.  Having control was the stressful element.

In a way if we get our epilepsy under control with drugs and by making sure we look after ourselves it’s a bit like being the monkey pressing the lever to stop the shocks – we can avoid the horrible seizures but we have to make sure we take our medication every day, get enough sleep, eat healthily, don’t drink alcohol.  

The more we do to try and stop the seizures the more pressure we put on ourselves not to mess up.  Then because we don’t have seizures any more we take on more responsibility, we drive, have children, take a job which relies on us being seizure free… and then it’s even more important we don’t slip up – miss our medication, have a bad night’s sleep, get stressed over things, because the consequences of having even just a single seizure are so much greater now…

It’s something I have always felt bad talking about because I feel I should just feel lucky to have such control over my seizures that I can do so much with my life, but suddenly I realised I'm not alone in feeling like this and by not speaking out about it I am bottling up stress and anxiety which isn't healthy.  

Maybe just maybe there are other people out there who feel the same and by writing this blog I might reach out to you and make you know it’s OK to feel anxious and down sometimes even when your seizures are well controlled – because we still have to live with the unpredictability of epilepsy just in a different way.

Half way there ~ the ups and downs of epilepsy and pregnancy!

So we had our 20 week scan yesterday and baby is doing really well.  It was actually done by a consultant who while extremely quick seemed very competent so whilst we didn’t get much of a chance to really see baby, I feel like the baby has been checked by the best person possible.

 

The other good thing about this is that it now means we don’t need to see any medical professionals for a while which I am really happy about.  I can now get on with enjoying my pregnancy which is going really well at the moment and the epilepsy midwife I have been in contact with is making me feel really positive about the whole thing.

I have also been convulsive seizure free for 16 months and completely seizure free for 6 months – this is something I really didn’t think possible and while I am very aware that my epilepsy is a type which is difficult to fully control and so may rear its ugly head any minute I just want to enjoy it while it lasts.

But unfortunately we are really struggling to keep my pregnancy non-medicalised and I’m finding it very frustrating.  We had a hospital appointment a couple of weeks ago with the consultant team at the hospital I am giving birth at.  I was meant to see the consultant but because they were running so late I ended up seeing a registrar who knew absolutely nothing about epilepsy.

We clashed over a number of issues... 

Firstly – scans – they wanted to do an extra scan at 34weeks, the epilepsy midwife has told me a detailed scan at 20 weeks by a consultant is enough and I want to stick with that.  They weren’t happy and told me I wasn’t thinking about the baby and then brought up the fact I had refused the Downs Syndrome Test and told me the babies neck was normal thickness which was a good sign –but we didn’t want to know and now you have told us – what if it hadn’t have been normal would they have told us then???

Secondly – an IV – they want me to have an IV in and I don’t want one, their answer to that was – keep seeing the councillor – like she’ll be able to convince me to do what they want!  I don’t want to have it put in so they can put lots of other things through it to cover every possible eventuality.  If there is a medical need during labour then they can put one in then.

Thirdly – discharge – so apparently I’m not going to meet their early discharge criteria even if I have a normal pregnancy and straight forward labour so they will want me to stay in – when I asked why they replied because you are at a high risk of having a seizure after – my argument was that I don’t need to be in hospital if I have a seizure as they have always self-resolved and I will have much more support at home from Rich, family and friends and will be much less stressed at home.  I can self-discharge so although I don’t want to do that I guess it may be the only way to ensure I am in the best place for me and baby.

Fourthly – seeing the consultant team again – I didn’t want to see them again unless anything changes, they want to see me regularly, in the end we decided I would go back at 34 weeks after I had seen my specialist in London.  They told me 4 times ‘you MUST tell us if anything changes with your epilepsy’ making me feel like I was being irresponsible but all I am doing is following the advice from the only epilepsy midwife in the country and I am planning to travel down to Winchester to see her again before this appointment as well just so I feel confident in my decisions. 

But on a positive note I could feel the stress that in the past I know has triggered my focal seizures and I didn't have one - so maybe the Keppra really is helping.

To be honest if I do have a seizure they won’t be the first people I call because they won’t be much help, apparently they can’t even take my Keppra levels so I’ll have to go to London for them anyway, I’ll be calling my team in London first and the epilepsy midwife second then I’ll let the obstetric consultants know.

 

I hate that they are making me feel like I am being irresponsible by not wanting intervention, especially when I am doing what my epilepsy midwife and specialist have suggested.  I am happy to be monitored like any other woman and if they have any concerns at any point I am happy to increase the amount of monitoring and intervention.  But at the moment my epilepsy is the best controlled it has ever been and my pregnancy is going well – why can’t I just enjoy that and feel blessed to be in this position rather than thinking about all the horrible things that could go wrong?