Christmas and New Year

We have had a lovely Christmas. Rhiannon hasn't really noticed the Christmas tree or its twinkling lights. Perhaps next year she will be more interested. She was, however, interested in the tearing noise of opening presents, and so appeared to be quite excited by everything. Matthew and I were fairly restrained and bought her bath toys and clothes, but we have quite large families so she had a rather large pile of presents under the tree.

Epilepsy wise there is nothing new to report. Everything seems to be going OK. I haven't had a fit for a while now. I have been asked by the Pregnancy & Birth Magazine if I am interested in doing an interview for them about being pregnant and having epilepsy. Rhiannon and I were even asked to a photo shoot in London for the article. I have had to decline the photo shoot and offer some of my own photos as getting to London from Yorkshire with a five and a half month old baby is far too stressful. The train to London is a nightmare when travelling alone without trying to keep her amused for several hours. Then there is trying to get around London. I am simply too chicken for such an adventure. Hopefully they will still be interested and my husband's photographs will be acceptable.

Well I am writing this on New Years Eve. I am not going out. I haven't had a drink in over 16 months now. I am not too bothered about having a drink but as my epilepsy finally seems to be settling down I am loathe to have one in case it triggers something off. I haven't had a seizure caused by drink, but then I never really drank to excess anyway. So hubby and I have opted for a nice quiet evening in. Most new parents probably do the same - or am I boring? I shall probably celebrate with a glass of lemonade and a whole chocolate orange to myself :-)

Well I don't really do New Years resolutions as if you are going to do something you don't need to wait for a special date, however I am going to try and work out how to put photographs on the blog to make it look a bit less stark. Don't hold me to it though....

Happy New Year to you all.

Lisa

Epilepsy nurse & Christmas

I went to see the epilepsy nurse at Leeds Royal infirmary yesterday. I was referred to her when I had my fits after giving birth. Everything has pretty much calmed down now. I haven't had another fit for a while. I kept the appointment though to see if she had any parenting tips to offer about taking care of Rhiannon.

The nurse was really nice and very helpful. She was able to tell me that the epilepsy register for pregnant women taking KEPPRA has 70 pregnancies registered now, and there have been no abnormalities. Whilst it is still early days and this may change it is looking good. She didn't have any suggestions on top of what we are doing to keep Rhiannon safe, and said we were doing a good job. I don't think she thought she had been very helpful but it was reassuring to be told we were doing everything we should be. She also said to ring her if I needed advice in the future.

I did tell her my husband had wanted to come to and she said if he could not get out of work or wanted to ask her anything generally then he could ring her too. Matthew was very pleased with this as if I am out of it after a fit for a few days then he could sometimes do with a reference point to talk things through himself.

Well Christmas is coming. We are putting our tree up tonight - hooray. I can't wait to see Rhiannon's face when the lights are twinkling on the tree. I guess I will be very disappointed if she is not interested.

Well that is all for now.

Merry Christmas to you all.

Lisa

Comments from Micelle & Joedy

I had two comments posted by Michelle and Joedy, on my second til last email. Their comments were really interesting and it was nice to hear from fellow sufferers, for want of a better word. interesting to see that someone else was taken off the tablets I take because they were not compatible for pregnancy and I was put on them because they were. Roughly the same year as well. It would be nice if doctors/consultants could all agree on what medication works best is suitable in pregnancy. A bit like the campaign Epilepsy Action are undertaking for consistent care. They should maybe add consistent advice to the list.

If only I could work out how to use this blog properly I would have noticed I had comments a little earlier and been able to respond. Still computers were never my strong point so just adding to my blog is an achievement in itself. I tried adding a photo the other day. I gave up half way through.

Ciao.

Further updates 13.11.2007

Well I am still fit free. Been a few weeks now so I am keeping my fingers crossed that everything has settled down.

It is my husband's birthday today. My Mum and Dad babysat and we went for a ramble in the Pennines. I am absolutely shattered this evening. I am soooo unfit compared to before the pregnancy. However we used to g walking most weekends before Rhiannon. 12 mile hikes clambering around the Lake District.

Today felt more like I was staggering around with legs made of lead. Still I am out of practise. We still climbed over 600 metres and walked about 8 miles so I am not that unfit. I could do with more practise but we can't leave Rhiannon too long. She is far to addictive and I miss her

I am waiting for some copies of the weekly news to be sent to me as the article I did the phone interview for should be in this weeks edition. Unless I turned out to be too boring and they dropped me.

Well that is all for now.

Lisa

:-)

Update

Well nothing much has happened since I got back form holidays. I, thankfully, have not had another seizure since the one t the start of my holidays. Touch wood that will be it for a while and the medication is now working. I have started taking the higher dose and am hoping that this now does the trick.

We are obviously still concerned that if it is not controlled that I may be carrying Rhiannon and am anxious to make sure my medication is definitely working now. I don't want to return to work until this is sorted. It will be stressful enough going back to work and leaving Rhiannon without worrying about having more fits too.

I did a phone interview for the Weekly News yesterday to help promote the Ideal World for Women Campaign. I spoke to nice reporter called Russell. We had a chat for about half an hour about the Blog, my experiences and the campaign. Hopefully the article will be OK. I am a bit nervous about interviews. The radio ones were quite scary but at least they are done after the phone call. I have to wait for the article to come out in print to see how I cam across.

I hope that the blog and the odd interviews helps either the campaign or someone effected by epilepsy.

Rhiannon has found her hands in the last week and is taking great joy at staring at them and talking in baby language to them. This is proving far more entertaining than anything I could watch on TV at the moment. I don't know what I did with my time before she came a long. I could watch her all day.I think I have the most beautiful, clever baby in the world. Now I suspect most parents think that - though in my case I am sure it is true.

Well that is it for now.

:-)

Back from Holidays

Well we got back form our holidays yesterday. It didn't start too well as I had a fit on Saturday morning before we left. I managed to bang my shoulder on the corner of the computer table and it still hurts now. We risked it and set off in the afternoon and thankfully I was fine throughout the holiday. We have decided to take the Neurologists advice and increase my dose of medication. I am really hoping that will put an end to the seizures as they are becoming too regular at the moment to be considered break through seizures which is causing both Matthew and myself quite a lot of anxiety.

I am also concerned that I might have one whilst carrying Rhiannon, which is really scary. I try to do as much as possible to reduce any risks to her, like not carrying her up and down the stairs, I don't bath her and I strap the push chair handles to me so I cannot loose the buggy if I have one in the street but it is still worrying. Before I had her I only had the odd break through seizure every through years, so we thought the risk would be minimal. At the moment it feels like I am a bit out of control.

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We rented a cabin whilst on holiday which was nice as it was all on one floor. This was fab because it meant I didn't have to rely on Matthew to carry Rhiannon up and down stairs and I could put her to bed for afternoon naps rather than her sleeping in the living room. I have decided I need to live in a bungalow. As I can't afford a mortgage on a house a bungalow is unfortunately way beyond my reach so I will have to keep buying the lottery tickets on a Saturday and hoping for a miracle.

WE have a lovely holiday. My parents came with us and kindly babysat on a couple of days so I could go fell walking with Matthew. This was fab. I haven't been walking since the Spring so I really enjoyed getting out into the fresh air.

I came back to find some comments on my blog, so I now need to make sure I reply to them all.

Neurologists Appointment

I had a check up today with my Neurologist. Since I had my last seizures my G.P has been in touch with him, as a kind of middle man to decide how to proceed with my medication. The dose was increased to 1750mg in the morning and evening. However the neurologist seemed to be under the impression I was taking 2000mg in the morning and evening.

It is a little concerning that I am not taking what he thought. I pointed out that all that seems to happen after any break through seizure is that they just up the dose rather than figuring out the cause is or working out if the medication even works.

After a chat I was advised that I had a couple of options:

* I could keep the dose as it is and see how I get on with the option of upping the dose if I have another fit

* Or I could increase the dose to 2000mg in the morning and evening now. He said that having a small baby would make them err on the side of caution and perhaps up the dose quicker


If I had a fit on the highest dose then they would have to introduce a second Anti Convulsant to take in addition to the Keppra!

I have taken Epilim previously and am not keen on taking this again as it makes me quite tired. Anyway I have yet to decide what to do. Matthew and I will mull it over, for the next couple of days and I can then let the GP know what I want to do if I want to increase the dose.

I have spoken to people who are on two AEDs before and they were not very happy with the side effects two types of medication caused, so I am hoping this is not going to be necessary. If anyone else is on a combination of Keppra and Epilim I would be interested to know if they have any side effects.

Well that is it for now. We are on holiday in the Lake District next week so I am looking forward to the rest, some walking, and going treating myself to fish and chips at the Old Keswickian in Keswick - highly recommended if you visit Keswick. It will be Rhiannon's fist holiday, and our first holiday as parents. We are going with my Mum and Dad and are really looking forward to relaxing, the views and some walking. After last month and my seizures we are definitely ready for a break.

:-)

Radio Interviews

I did a couple of radio interviews yesterday with Nicole from Epilepsy Action - Women. She is trying to raise awareness of failures in medical assistance for women with epilepsy. In particular around puberty, pregnancy and menopause when hormones can reduce the effectiveness of medication. The BBC Radio York one went really well. I explained that I had actually had good care from my GP and specialist, but that I knew this was not the case for a lot of people. We needed to have consistent information, care, treatment and regular check ups for everyone nationwide.

I also did a pre recorded bit with the local radio station and Leeds radio. Hopefully I helped but it was all rather nerve racking being on radio. I am not good at public speaking and whilst no one could see me it was still quite terrifying.

My Grandparents, Mum and Dad listened to the live BBC York interview and thought I was great. They are exceptionally biased with me and my two sisters but I will happily take their word for it in this instance. My husband also listened to it on the Internet in the evening and assures me it went well.

The local station asked to keep my telephone number in case they have future pieces about epilepsy and might want to speak to me again. Can't have been too bad after all.

Well, signing off as Rhiannon will be wanting her next feed.

Why I am doing the blog

I am hoping that by doing this blog other people with epilepsy will contact me and share their experiences. In particular my husband and I have found that having a baby and coping on a daily basis somewhat stressful. Our little girl, Rhiannon, is a beautiful and happy baby.
Whilst we knew before having her that my having epilepsy would make how we cope with being parents different to the average parent it is sometimes difficult. For example we are conscious that were I to have a fit and be holding Rhiannon that I may hurt her. To try and reduce this my husband carries her up and down the stairs at home. He takes her down in the morning and I look after her in the living room throughout the day. When Matthew comes home he baths her and takes her upstairs to bed. Only being able to look after her downstairs can be quite restricting. I can't put her down for naps in her cot for example. My neurologist has suggested carrying her up and downstairs in the car seat. Whilst I can see the logic this is not very practical, as by the time I have strapped her in, carried her upstairs and taken her out she would be totally beside herself as she doesn't like the car seat. If I go upstairs I therefore have to leave her downstairs and take the baby intercom system upstairs so I can hear her.
Having had several fits last month on the same day it has brought home the potential dangers of being an epileptic parent. Whilst we knew before having our baby that I could have break through seizures, especially whilst my hormones are settling after the birth the reality of having those seizures has really hit home. In particular my husband has found it difficult to go to work. For peace of mind, if nothing else, we have therefore arranged for family members to drop by each day. We have given them keys in case i don't answer the door. Whilst it would be impossible to have someone with us 24 hours a day it has certainly helped to allay our fears to a certain extent.
If anyone reading this has been in a similar position my husband and I would be interested to hear from you.

The Story So Far

Hi, My name is Lisa. I have been asked by Epilepsy Action to do a blog which focuses on my epilepsy and in particular how this effects having children and family life.

I first started having tonic clonic seizures when I was 11. That's 20 years ago! It was hoped that it was something that I would grow out of. I was not that lucky and still have break through seizures now and again. Being epileptic has not stopped me from doing most things. I met my husband, Matthew, at college, in 1993. We married in 1995. Matthew has always been fabulous when my epilepsy rears its head. He looks after me until I am feeling better, comes to hospital/doctors appointments to help explain what has happened and is a wonderful support.

I have always worked, from leaving college, and on the whole have had very positive experiences from employers when I have told them about my epilepsy. I find that if you tell people (managers and those who work around you) what to do and who to call if you have a seizure at work then they have not treated me any differently and that I have managed to progress my career despite the epilepsy.

We have just had a baby girl, Rhiannon, on July 14th 2007. I take Keppra (Levicetram) and prior to having my baby I was taking Sodium Valproate (Epilim). My husband and I attended pre-pregnancy counselling with my neurologist we changed from the Epilim to Keppra as this has less known side effect in pregnancy. Epilim is thought to increase the risk of neural tube defects. After much stress I changed to Keppra. I used to be very tired on the Epilim but the Keppra does not have the same effect and I feel much more alive and alert. It has not stopped me having seizures though. I had three on the day I fell pregnant, then none throughout the pregnancy. I had a fit 6 weeks post birth and then three the Sunday after that.

My neurologist has increased my dose of Keppra and I am on a progesterone only contraceptive to try and level out my hormones. It is hoped that if we can even out the hormones then I won't have any seizures. Here's hoping anyway.

I am currently trying to speak to other people with epilepsy who have had to make adjustments to their life/style in order to accomodate a baby. Or if you have any suggestions other than the usual - don't bath the baby alone, try to avoid stairs, etc, then get in touch.