Mothers in mind- The Pregnancy diaries

Last Updated:

28 Jul 2009

Review Due Date:

28 Jan 2010

Written by mothers to guide you through pregnancy and into early parenthood.

Foreword

Many women with epilepsy have told us that before pregnancy, and in pregnancy, they begin to think about their health and epilepsy. Baby foot You, yourself may wonder what affect your epilepsy, seizures or anti-epileptic drugs may have on the health of your unborn baby. Rather than wondering, you could request a copy of Epilepsy Action’s Mothers in mind booklet and ask your GP to refer you for preconception counselling.

In the meantime, you may want a little support through your amazing journey or the decision making process. Epilepsy Action set up The Pregnancy Diaries, to help you and other parents and parent to be, to support each other.

The Pregnancy Diaries has been written by mothers for mothers and fathers with epilepsy. The Pregnancy Diaries enable you to see similar journeys to your own. You can discuss how scary pregnancy can seem, share tips to try and make parenthood run more smoothly (we can dream) and, laugh about all the funny moments that happen during pregnancy and the early years. You can even become part of it: why not share your own experiences with the diary?

Whether you are thinking about pregnancy or pregnant already, we really hope that you enjoy reading about our pregnancy experiences and, find them useful.

Good luck with your journey, wherever it takes you,
Best wishes,

Nicola, Jennifer and Ingrid (new mothers) and Nicole (Epilepsy Action).

Have your say

PDF Leaflet:

Mothers in mind

Add new comment

Comments

Hi there,

We would really like to hear about your pregnancy experiences and invite you to add your comments here. It would be great to create a networking opportunity where you can share your thoughts, ideas and experiences. Plus, your comments may well help others through what may be a very confusing time.

I look forward to hearing from you.

Lucy Olafsson (nee Rollinson)
Communications Officer
Epilepsy Action

Submitted by andy@epilepsyaction on 8 September, 2008 - 13:08.

My Mother recently heard about the pregnancy diaries in a newspaper and has directed me to the website this evening. I am delighted to have found it and to see such a thing. My Husband & I are blessed to have one Daughter who is now 2yrs and 4 months old and I am currently 30weeks pregnant with our second child. Unfortunately I experienced several seizures during my pregnancy with my Daughter and after the birth and I have recently had a grand mal seizure in the last few weeks with this current pregnancy. With both pregnancies I have been concerned about my AEDs, having seizures whilst pregnant and the impact on the pregnancy/baby and caring for my child/ren and their safety if, when and where I have seizures. I would like to contribute to the diaries if it will be of assistance/helpful and of interest to others.

Submitted by Jo Needham on 3 October, 2008 - 21:11.

Hi Jo,
I suggest downloading the Mothers in Mind leaflet if you have not already done so. The link is just above my previous comment. There are a couple of ways you can assist us. The first is to become a media volunteer and help us raise awareness of the issues associated with epilepsy and pregnancy. If you would like further information, please go to the following link, www.epilepsy.org.uk/press/mediavolunteer.html or telephone me for a chat. The second is to record your diary entries on our pregnancy diary web pages, and share your experiences with other women.

Thanks

Lucy

Submitted by andy@epilepsyaction on 6 October, 2008 - 14:45.

I am planning to become pregnant. I having been taking the AED lamortragine and keppra for 7 years. When I went to the doctrs this week he said that he was unable to help me with information on keppra during prgnancy as it is a new drug. Lamortragine is fine but keppa there isnt much known. I was wondering if anyone would be able to help me gain some more information on this or advice if your having the same problems. I am waiting for an appointment to come through from a Sapphire nurse but i am now worried that they may take me off the keppra and I wont be about to control my abstances as this is the only medicatio that has ever worked for me. Can anyone help me please?

Submitted by sarah on 7 January, 2009 - 15:38.

I think the best people to offer some information about the combination of Keppra and Lamotrigine would be the people at the UK Epilepsy and Pregnancy Register. They have been keeping information about pregnancy and taking anti-epileptic medication for the last few years. I'm sure they will help you if they can.

Epilepsy Action helpline team

Submitted by Mark@Epilepsy Action on 12 January, 2009 - 11:10.

Hi, I would love to pass on my experiences being pregnant and after being a mother with epilepsy. I still have seizures after 40 years and being a mother was the most scariest and enjoyable thing i have ever done. I have a daughter age 12yrs and my husband and I coped fine now ! I gave birth to my daughter and had a grand mal seizure after 12 hours of labour at the same time which nearly harmed both of us but we were all fine. I should have just had a C Section but wasnt told that at the time. Anyway, it took my 6 months to take Alicia (daughter) outside for a walk by myself which was just stupid of me... I had all these visions in my head of harming her but in 12yrs I have never hurt Alicia in any way. You have to remember you are their mother and you would never harm them. I was seeing myself having a seizure and pushing the pram under a bus etc... never did have a seizure by myself with her until she was 10 and that was at a basketball stadium and someone was there to help and calm Alicia down....As it was the first time she ever saw me have one...ADVICE... Have lots of sleep, take care of yourself first, dont over do it with the grog!!! , and you will be fine to bring up children and be a great mum. Oh one thing tell everyone you have epilepsy then your children will always have a helper in arms reach... Well thats a quick version of me as a mum.... PAM

Submitted by pam on 23 February, 2009 - 01:27.

Hi Pam,

Thank you for sharing your experiences and showing parents and grand-parents they are not alone. Many parents worry about having a seizure when they are looking after children. Epilepsy Action website contains information on caring for children when you have seizures.

If you are worried about caring for children, you may like to discuss your fears through with our advisors on the Epilepsy Helpline freephone 0808 800 50 50.

And remember, if you have any good tips to help other parents with epielpsy, the Pregnancy Diaries is the place to share them.

Thank you,

Nicole

Submitted by Nicole Crosby-McKenna on 27 March, 2009 - 09:33.

Hello there

I am so glad that there is so much info on here about being pregnanet with epilepsy as I found out about two weeks ago that I am a month and half gone and I didn't know that I was even pregnanet when my doctor told me I didn't know what to do as I was scared because of my anit-epilepsy drugs which are 1000mg twice a day of keppra.

I have looked everywhere for books on pregnancy with epilepsy but there just nothing.

My friend told me to look on here for info and I am so glad I have.

You have given me so much info and put my mind at rest about a lot of things.

Thank you very much for starting this up I don't know what I would have done otherwise

Submitted by louise haddon on 12 January, 2010 - 21:01.

I have epilepsy and am also on a combination of Keppra & Lamictal. Whilst i was pregnant with my twin sons i remained on this medication as I was told that there was a higher risk to the babies if i was to have seizures during pregnancy than in taking my anti-convulsants so nobody ever recommended that i should come off the medication. I was refered to a neurologist because of the pregnancy so that additional scans could be arranged throughout the pregnancy (I had a cardiac scan and a more detailed ultrasound scan) and was under the care of a obstetrician in the Difficult Pregnancy Unit at the hospital as well as my midwife. The thing with any drugs is that no drug company tests them on pregnant women and so the experts are relient on people contacting them in Belfast so that they can gather retrospective data for future reference. I think this is more important if you are on multiple drugs as they need to gather this data possibly more than single drugs as there is a higher risk if you are on multiple drugs. I did this and hope that my experience will help them in advising other women in future. As it happened my seizures remained fairly consistent during my pregnancy with my having the usual 3 that i might expect normally.

Remember that it is your decision in the end whether to mess with your medication, if its not what you want to do tell them, they can't make you. Good luck with any future pregnancy!

Submitted by Karen on 15 January, 2010 - 11:15.