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
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
1 comment:
Hi Lisa
I think your blog is amazing and make me feel human again. I am 36 and have an 18 month old. Like you, I have an amazing supportive husband and I also work 4 days a week and so am out there trying to lead a "normal" a life as possible. I was only diagnosed finally about 6 months ago as an "epileptic" after a 24 hour EEG. I started having tonic clonic seizures very randomly from when I was about 23 years old - about once every 2-3 years and usually the morning after after a very big night out. All tests showed no abnormality so I was never put on any drugs as the fits were so infrequent (and I should add I am Australian and was living there at the time and where I am from in Australia- Brisbane - apparently has no neurologists who specialise in epilepsy - I found that out only earlier this year ...). Anyway, back to the potted history of my health - after a few fits post-huge nights out (not after every night out which is why I was so seemingly careless - it's hard to tell a 25 year old not to go out and party!), I grew up and curbed my drinking which seemed to stop the seizures altogether. However, they still turned up very randomly every couple of years usually at times of great stress. It was not until I had a fit late in my pregnancy (otherwise the pregnancy had been trouble free as I had stayed fit and healthy etc) a couple of days before we were due to fly back to Australia for my maternity leave (and have the baby there) that thoughts about AEDs came up. I was cleared to fly back to Australia and did so and then the fun really started. I had another fit a couple of weeks later and was put on phenyntoin (epanutin). I had the baby naturally - all went well and then I had a fit a couple of hours later. Then the experimentation with different drugs just kept happening. The phenyntoin kept increasing and then I was started on lamotragine and eventually it has come to be seen that neither stopped any fits. In fact, the odd thing is that since the baby, I have had fits about once a month ie more than ever in my life (and not after drinking vast amounts of alcohol as I haven't done that in years). However, (as you know) having a new baby is a stressful yet wonderful experience and I went through the whole barrage of post-natal depression etc. I also have not started on the contraceptive pill though again (due to the phenyntoin) . At the moment, I am trailing off the last of the phenyntoin (at the high doses of it and lamotragine, I just felt horribly dopey and stupid and still having fits) and am about to start trailing off Keppra as it has also failed to stop my fits. My doctor wants to start me on Epilim and believes that it should stop my fits altogether. We just held off trying it due to the usual concerns they have about it and women.
I am not sure this is the answer either. I suspect that I should go back on the pill, get fit again and level out all other aspects of my life as much as possible. I would be happy to go back to having fits possibly once every couple of years and be aware that times of high stress etc, I have extra risks. We shall see. Have you heard of other epileptics with such infrequent fits (when drug free)? I am a strange case as I have had more fits since going on the AEDs (and post-baby)! I am not looking forward to the Epilim due to all the potential side-effects but there is always hope that it will stop the fits so I guess if it does that, the side effects may be worth it. The problem is that my faith has quite dwindled really in terms of belief that the drugs can help me at all. I have also come to the belief that I can't/won't have any more children until this is under control and definitely no more children if I am on Epilim. I guess the real issue, is the lack of knowledge overall as to what will/can happen but then again, everyone in the world would like a crystal ball at times. I tell myself that I am lucky that the fits are so infrequent to start with ie trying to harness the power of positive thoughts!
Anyway, sorry about the ramble but again, just wanted to tell you that your blog is fantastic as (as you said), it's just the knowledge that we're not alone that of itself is incredibly powerful. I was beginning to think I was the only mad person with a baby and going through all this cr*p. Keep the blog going!
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