Three weeks after my initial neurology appointment following having Noah I was back again. For the first time in months I went alone. It was a weird feeling but I needed to get out alone and what better place to be heading than to the neurology team! On the whole there had been some improvement with the epilepsy (Noah was just over four weeks old). I had slowed down the decrease because of lack of sleep, I was worried about the effects the decrease would have on me as it is a huge trigger for me, and now more than ever I knew I had to be fit and healthy for Noahs sake. I always knew having a baby would mean sleep deprivation but I was trying my hardest to manage it as best I could. So I went against the doctors suggestions of how quickly to reduce the Lamotrigine, in my case I slowed down the decrease, thinking I knew best. However I was still feeling dizzy and “drunk”, this was where I got a bit of a slapped wrist from the epilepsy nurse. He informed me that I was feeling like this because my hormone levels were dropping and the lamotrigine levels were rising, and I needed to do it at the speed suggested to make sure the levels didn’t get too high. He sent me off for blood tests to check my drug level, I hate blood tests, so last time I won’t do as I’m told.
Before pregnancy I was on 250mg Lamotrigine twice a day with no secondary med. The plan is to try and get me back down to this or as close to it as they can and completely get rid of the secondary drug (Keppra). The epilepsy nurse was of the opinion I should bring the lamotrigine down to 275mg twice a day then reduce Keppra. The neurologist was of the opinion it should be 300mg and then reduce Keppra, of course the Neuro won that one. So I have worked my way down from 400mg twice a day to 300mg x2 and to remain on that for two weeks. I am now at that point and in the middle of two weeks and still taking Keppra 1500mg twice daily. Come the end of two weeks we begin the reduction of Keppra and that is a much slower progress. It will only be reduced every two weeks so ten weeks from now I should be free of Keppra and then it will be time to see what the Lamotrigine is doing on its own and how far that can be taken down.
It was also lovely that one of the other nurses on the team popped in to say Hi, I had seen her prior to my discharge following birth, she had called me in the days following going home and I had dealt with her previously. She just wanted to come and see Noah J Again it’s the small things. The biggest shock of the appointment was that once the drug plan was drawn up the epilepsy nurse said they didn’t need to see me until mid - October. I completely understood this, whilst on a drug reduction there was nothing they could do. So I had their number and just had to phone them if I had any problems or seizures started increasing. Before my pregnancy I hadn’t seen them in 18 months. However after seeing them every 3-4 weeks in pregnancy I was apprehensive. It was also a nice feeling though, I felt like we were taking a step in the right direction and I was almost starting to take some control back of my own life. I know epilepsy does as it pleases but I am starting to feel more confident in taking it on again, and I have more reason than ever to kick its backside.
Six week check up
We went for our six week check-up and whilst sat in the waiting room I met another lady who had epilepsy and her babies were ten weeks old. We got talking and discovered that we were under the same neurology team and both had our babies at the same hospital. It is amazing how peoples’ experiences can vary, she wasn’t as big a fan of the neurologist whereas I am, but we were both in agreement that we both loved the obstetrician. I think her problem was that she found the neuro too blunt, whereas on the other hand I found this useful. She felt he didn’t really answer her questions where as he always answered mine to my satisfaction. Who knows what causes this difference in care. Is it the amount of time I have been under him? Clash of personalities? Will we ever know? We discovered we both struggled most with complex partial seizures and the sleep deprivation was tricky. We ended up swapping numbers as we are in very similar situations at almost exactly the same stage in our children lives.
Firstly we saw the health visitor, Noah is gaining weight nicely and they are happy with him. They sat down and had a chat with me about how I was coping and if I was getting enough rest. We then started talking about the medications and I talked through with her that I will always carry a guilt for carrying on taking the meds during pregnancy. She pointed out that things could have been worse had I continued to have seizures and Noah had been starved of oxygen. She was right and I knew it but I don’t think that guilt will ever shift. She then did say at least I wasn’t taking sodium valproate because the risks associated with that were much higher, I looked so shocked, she actually knew what she was talking about. We then went on to see my GP and she did all the checks she needed to on Noah, she was happy with his development, and knowing what my concerns were was very reassuring. Her exact words were “he’s perfect”. Well I was never going to disagree I’m his Mum!
Here and Now
Today as I write this I have probably had the worst few days since Noah was born and unfortunately I have the injuries to prove it. I think a lot of this is secondary to feeling generally run down, it always plays up when I am ill. However that said I am slowly finding my feet in motherhood, Noah is growing so fast and I cannot believe tomorrow he will be 7 weeks old. Chris is an amazing Dad, Pups taken to Noah so well and I love seeing how they are starting to interact, I am just one lucky girl. I’m the first to admit it hasn’t always been easy and I count my blessing every day especially when I think back to the dark days of the seizures and being hospitalised twice whilst pregnant.
The funniest moment of late has been this: sat at home with Chris one night I announced I missed being pregnant, Chris jaw hit the floor. I think he sat with his jaw hanging open for about 20 minutes. Whilst I don’t miss the side effects or the effects it had on my epilepsy I do miss my bump and carrying Noah, I still think Chris doesn’t believe I said it!
One of the trickiest things I have found since having Noah is that I am a total nightmare at remembering to take my meds. I think it’s a combination of sleep deprivation and getting to grips with being a mum, I can set alarms, it goes off and I still carry on doing something else and next thing I know it is hours later and I still haven’t taken them. I have started to pop the next dose out of the pack when taking the current dose, so that when the time comes round I don’t even have to think about it I just have to get a drink and take them. It is something I really have to work on! If anyone has any tips or suggestions on this they would be greatly appreciated!
I have been asked to include this in my blog as the more people it can reach and the more participants this study gets the more credible the results will be. Obviously upon gaining more information it is down to the individual to decide if they wish to take part. The study is funded by the National Institute for Health Research and the team based at Manchester Central University Hospitals.
The NaME Study
Do you live in the North West or North East of England, or Northern Ireland? If so, researchers are looking for women with epilepsy who are in their first or second trimester of pregnancy to take part in a study looking at child development.
The study is investigating the development of children born to women with epilepsy. If you are interested or have a patient who might be please contact the NaME study team on Name.Study@cmft.nhs.uk or call them on 0161 701 9136 to find out more.
Young Epilepsy: We’re coming to a front room near you.
Young Epilepsy students are taking a starring role in a new BBC Three documentary about epilepsy entitled, Epilepsy & Me.
This will be part of a season, called Defying the Label, which tells compelling untold stories that reveal a glimpse of life as a young disabled person airing this summer. The episode will air on the 10 August 2015 at 9pm and features three students who attend St Piers College and one young man who visited the Neville Centre at Young Epilepsy.
What happens when people can’t see your disability? When it is 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?
Epilepsy & Me is a film about people whose seizures can be a daily occurrence and have to be watched 24 hours a day. This film follows four people at crucial points in their lives as their futures are being decided.
For further information on the Defying the Label season, please visit the BBC Three website
For more information on Young Epilepsy visit: www.youngepilepsy.org.uk
I have mentioned Alex numerous times in my blog over the last 9 months, on Monday 27th July myself, Chris and Noah had the pride and privilege to celebrate Alexs graduating from University with a 2:1 honours degree. Alex has always been an amazing friend and in the last year of her degree, the most pressurised, she has taken the time to support me. She has helped me through pregnancy and bereavement, has helped Chris get a break when he needs it, looked after Pup, organised my baby shower, been an ear to bend, a shoulder to lean on when I needed it, given me the courage and encouragement to start this blog in the first place and proof read every single entry giving me an honest opinion and she was also our source of food and clothes whilst I was in hospital having Noah. She has just been my friend and kept things normal for me and her support has continued since Noahs arrival, both myself and Chris will never be able to thank her for everything she did and does especially when she had so much going on herself. She has been a fantastic friend over the four years I have known her and I have always believed in her. I knew she would get here. She is a remarkable woman with courage, compassion, loyalty, patience and kindness that I so admire. So a HUGE congratulations to Alex, again we couldn’t be prouder than we are, and I didn’t shed a tear when I saw you in your gown (honest!). Thank you for allowing us to be part of your special day, and for being part of our lives, we love you very much.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.