Epilepsy and Pregnancy - Anyone with any experience of this??

[littlemisspiggy]

A friend and colleague of mine is epileptic. She is at a point in her life where she wants to consider starting a family. However, the medication she is on (I don't know which)forbids pregnancy as it can cause neurological defects in the baby. Unfortunately she stopped taking the medication (after having her dosage reduced following a fit free period of 3 years) hoping to conceive, and ended up having a fit recently.

My question is what do other women do who suffer from epilepsy and want to start a family? Surely they are not excluded from the chance of having children because of it? I would be interested to hear from anyone who has been it that situation so I can give my friend some encouragement.
Thanks.

Sorry I've not been in the situation myself, but my DH is epileptic so I have read around the subject - I'm sure there are certain anti-convulsant medications that can be taken during pregnancy - I am assuming your friend sees a specialist, I am sure they can advise her the best ones to try given her situation. It just may take some time for her to stabilise the seizures enough for her to feel confident about trying to conceive. She is lucky to have a friend like you to support her! You could try contacting Epilepsy Action for more info - \link{http://www.epilepsy.org.uk\link here}

\link{http://www.epilepsy.org.uk/info/family.htm\Information on starting a family on the Epilepsy Action website}

Oh thanks Lahdeedah. I shall print this thread and show her the website addresses. At least she will know that she can get help and direction without taking drastic action herself.

I have epilepsy and also have a very healthy absolutely fine two year old. Unfortunately some people don't get the right advice or aren't able to take the drugs that carry less risk of causing birth defects. But many women with epilepsy are left on sodium valproate or Epilim because nobody ever bothers to think 'Oh, this patient is of childbearing age, better review her medication'. Which is outrageous.

There are anti-epileptic medicines which carry a far smaller risk of birth defects - I take lamotrigine (Lamictal) which is one of the 'safest' as far as anyone can tell. She also needs to start taking high-dose folic acid as soon as possible as the medicines inhibit folic acid absorption PLUS one of the potential birth defects is spina bifida, which is why everyone takes folic acid in the first place. I was on 5mg daily.

She should have an appointment with a neurologist who can talk her through the options on medication and the risks.

Generally the risk for women with epilepsy is said to be double that of the rest of the population - but it's more complicated because people take different medicines in different combinations at different doses and have different symptoms. But even with a doubled risk, that means the vast majority of babies born to women with epilepsy are absolutely fine. Personally I wouldn't get pregnant if I was taking sodium valproate/Epilim though, but that's just my personal take on the matter.

What she has to decide is the trade-off between the risks of taking the medicines and the risk of seizures. Most doctors would say you are better off taking the medicine and controlling the seizures. I'd agree but try to get switched onto a medicine that carries the lowest risk - and avoid TTC until I was stabilised on that medicine.

The dose may need to be upped in the third trimester because you have an increased volume of blood swilling round your system, so the dose of any drug is less concentrated. I waited to see what would happen and had a couple of seizures as a result. But the likelihood that the drugs will cause defects in the third trimester is low because all the organs have been formed, baby is just growing (IIRC). If she does get pregnant, she'll probably be offered an extra heart scan in late pregnancy too.

HTH and hope everything works out for your friend.

edam, a Big Thank You for talking to me about this the other day..it was really helpful. (btw, I don't know if you'd like the contact details of the woman we did use in the end (she's now seizure-free after surgery), she was involved in drawing up guidelines on this issue for primary care, along with Dr Smithson who's on today's Case Notes, at 3.30pm)

Thanks Bundle, will try to listen today - and contact details would be interesting, thanks.

Oh, second Fio, this is one for a neurologist, not a GP.

Thank you all. Edam, I will show her your post as she will obviously know which drug she is on at the moment.

littlemiss, if your friend would like to talk to someone who has been there, happy to do that - CAT me if she's interested.

Thanks Edam, I'll let her know.

Edam, my friend says she is on the Epilim and will now see about getting switched to Lamictal thanks to your post. So, thanks again for your help.

Gosh, no problem at all, glad to be of help. She is seeing a neurologist, not just a GP, isn't she?

Yes I think so although she did try to get a bit of info from her GP as her neuro appts aren't frequent and GP was useless apparently.

btw, the Case Notes programme on epilepsy today, is at 4.30, not 3.30

GPs don't normally know much about epilepsy - they tend to leave it to the neurologists. She can just phone up the neurologist's secretary and ask for an earlier appointment herself, you know, doesn't have to wait until the next scheduled one.

When I wanted to start a family I had to rduce the dose of the medication i took down to a less risky level that in itself took 3 months to find a point where i would be medicated and fit free.I took folic acid for ages beforehand.I was scanned regularly once I was pregnant.I have an 11 year old and a 9 year old both pregnancies whilst i was on anti convulsants.Just a case of pacing myself not getting overtired etc which is my trigger.Wasnt able to breastfeed cos of meds but both my children healthy and well.My mum is also epileptic and had me but my epilepsy is due to a head trauma and not inherited.I wish your friend lots of luck it is do able.

B/f is obv a long time down the road for your friend, but worth saying it depends on the drug. I fed ds for seven months on Lamictal.

My sis has a child who has a syndrome assoc with one of the drugs. She was told to take a high dose of folate, but there is also a debate about how high, as i believe this in itself can also cause problems.
Sorry, that may not be alot of help- except to say that she MUST see a specialist BEFORE ttc.
Sodium valproate can potentially be a very nasty drug for a growing foetus

My daughter is epileptic and she takes Sodium Valproate. I know that this particular drug is extremely effective at controlling seizures but it is dangerous when pregnant as it can cause birth defects (valproate syndrome). I have done some research into epilepsy and pregnancy and the general opinion is that the chances of having a child with birth defects if you are not taking any medication are much much smaller than if you are taking epilepsy drugs throughout pregnancy. Obviously any woman with epilepsy who may be prone to seizures in pregnancy is still at risk but the risk is very small compared to the risks with medication. I was told that when my daughter got to child bearing age that they would probably look to change the medication to something safer but personally I would prefer her to not be taking anything if she chooses to have children. She had the same experience with her medication in January, she was weaned off it just before Christmas after neing 2 years seiure free but unfortunately as soon as the drugs were out of her system her seizures came back very quickly. Your friend needs to talk it all through with a specialist as she may need to come to some sort of compromise regarding her medication. I think its a matter of weighing up the balance between the risks of being on medication, and the risks of any potential probs caused by any seizures that may happen in pregnancy. I hope that she gets the advice that she needs and that she goes on to have a lovely healthy baby.

\link{http://www.bbc.co.uk/radio4/science/casenotes.shtml\Case Notes} on R4 was about epilepsy this week and had a section about pregnancy. Lots of links at the bottom of the page and you can listen again there too.