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.