Pregnancy and taking Lamotrigine

[real13]

If you took Lamotrigine throughout your pregnancy, can I ask if you had a healthy baby?

I’ve got myself into a massive panic that the Lamotrigine is going to massively impact my baby and it won’t come out healthy.

I read somewhere that newborns can have ‘minor breathing difficulties’ when first born & they have to withdraw from the Lamotrigine. It all sounds like it’s not a big issue from my googling, but I’m so worried.

Hi @real13 I can only speak from personal experience but I’ve had three healthy pregnancies/babies while taking Lamotrigine. I’ve always taken high dose folate (called Megafol 5mg where I live) whilst pregnant on the advice of my neuro. Could yoh chat to your midwife, GP or neuro about your worries? Take care of yourself.

Yep. Same as @PleaseBeGentleVipers

I also took 5mg of folic acid every day. Which i got on prescription.

Oh great.

Pleased to hear that you’ve had healthy pregnancies and babies.

I’ve been taking 5mg of folic acid. Unfortunately neuro have been absolutely useless & my midwives have never dealt with this situation before. Myself & midwives have tried to get in touch with epilepsy nurse & neurologist for advice as my seizures have started up again. Epilepsy nurse had a voicemail to say the service has closed down & my neurologist is off for a month with no cover!

It hasn’t filled me with much hope. I was really hoping to talk it all through with someone but it seems borderline impossible.

Thanks so much for your experiences. That makes me feel a lot better!!

@PleaseBeGentleVipers@ChimpanzeeThatMonkeyNewsDid you find that your babies had any sort of withdrawal symptoms or breathing problems etc when they were born? I’m hoping it’s just something that only applies if your Lamotrigine dosage is really high or something.

I am 32 weeks pregnant and have taken Lamotrigine throughout the pregnancy with the high dose (5mg per day) of folic acid. According to BUMPS (and my care providers) “Lamotrigine is well-studied and is not known to harm your baby when used in pregnancy”. Any drugs have potential side effects but I found the BUMPS guidance very reassuring.
https://www.medicinesinpregnancy.org/leaflets-a-z/lamotrigine/

as a result of taking Lamotrigine I have been classified as a high risk pregnancy and having growth scans every four weeks - is this something you have been offered? As I have also found these reassuring.

It sounds like you haven’t managed to speak to your neurologist about your seizures starting again? During pregnancy your blood volume can up to double which effectively dilutes your medication so it’s much less effective. I have been getting regular blood tests to determine the levels of Lamotrigine in my blood and my dosage has been increased accordingly. If you haven’t had this done then that might be the cause of your increased seizures?

I am really sorry to hear your neurology team has been so useless 😔 as they have a really important role to play in your care throughout pregnancy. I would definitely make a complaint about this. You could also speak to your midwife about a referral to the antenatal mental health team if You feel it might help your anxiety. Unfortunately you’ll always find the horror stories online, rather than the vast majority of times it all just went fine.

I am really sorry to hear that you’ve been so let down by your care team in what is already a stressful time. I hope that things can improve for you as your pregnancy progresses x

@BigHeartyTruffleThanks so much for this.

I’m only 9 weeks so my antenatal appointments haven’t started ‘properly’ yet. I got in touch with midwives as soon as I had a seizure and they sent me to a&e to have lamotrigine levels checked (which they discovered were low). One of the Doctors there told me to increase the Lamotrigine to a certain level. That was about 4 weeks ago, so I’m going to nag again and ask for them to be checked monthly (which they should have suggested already :/). How often did you have the blood tests to check?

I did have an early scan, but nothing more has been mentioned. I’ll bring it up when I have my first appointment.

Really appreciate your response, thank you :)

I took Lamotrigine all through my pregnancy (2021) and my baby was absolutely fine - she was born almost 4 weeks early because I had three seizures in a row and my consultant decided she needed to come out then and there - but she was 6lb 14 and perfectly healthy.

Its frustrating that your epilepsy team have been a bit useless - I’m currently 6 weeks pregnant and my epilepsy nurse has said we’ll just check my levels at 12 weeks, but they do start to do more regular checks on your levels as you get further on in your pregnancy (well, they should anyway!). You should also start having appointments with the Obstetric Epilepsy clinic once you’ve had your booking appointment so you should start to feel a bit more closely monitored soon - I got sick of how many appointments and blood tests I had to have last time!

Some medication increase the risk of poor neonatal adaptation syndrome. It's when baby struggles to adapt to being in the world. They can struggle to regulate temperature and things like that. About 10% of babies get this and some medication increase the risk. I wasn't on lamotrogine in pregnancy but a different drug that also has an increased risk of poor neonatal adaptation syndrome. I had a planned 3 day stay in hospital after she was born and every 4h she had various observations made like temperature and O2 levels. She scored a perfect 0 points on every check and we were discharged home after the 72h.

My son didn’t have any issues like that, i can happily tell you. He’s almost 14 now, so, I’m casting my mind back quite a bit.

I’m livid on your behalf at how you’ve been hung out to dry by your Neurologist.
You’re so vulnerable when you’re pregnant and you need proper care, not half hearted shite like this.

Before this, when was your last seizure?
What are your usual triggers?

@real13 have you had your booking appointment yet? I think that’s where it was established that I fell into the high risk category so my consultant led care started there and I had my first appointment with them on the same day as my 12 week scan. If you aren’t getting anywhere and haven’t already, I think it’s worth pushing it through all the channels you can including your GP and community midwife. I’d also give the epilepsy helpline a call as I’ve found them really good in helping understand your rights and how to navigate these types of situations.

I’ve had three blood checks throughout my pregnancy, but I haven’t actually had any seizures during pregnancy so I don’t think I was such an urgent case. My Lamotrigine has ended up being really low every time though and I’ve ended up at double my previous dose. Really good idea to push for once a month given your circumstances.

You are doing well getting on top of this early and I hope things improve quickly x

2 healthy pregnancies on it! No issues for babies, discharged in 24h. I did need increases on both as blood volume went up

@ChimpanzeeThatMonkeyNews My last seizure was 4 years ago. They’ve been controlled really well, but the pregnancy seems to have triggered it straight away. A lack of sleep and stress normally set them off, but it’s been such a long time.

I started to feel weird again recently, so I’m upping my dose by the smallest amount again. It’s just annoying that they haven’t been proactive. I’m going to ring them again and push for the blood tests. I just kind of assumed they might have thought to sort it but they’ve done nothing at all.

I’m hoping after the scan that everything will be put in place properly, and if not then I’ll have to make a complaint.

Neurologist has finally been in touch!! In so excited ti get help 🤣. He has asked that the GP set up another blood test for me & has sent me a face to face appointment in July.

Got there in the end!

@real13 brilliant news 😊

I took it until 34 weeks. Babies are all fine and healthy. No problems at birth

Yes I had my DD and she was absolutely fine. You should be having fortnightly blood tests to ensure you are on the right dosage. I ended up increasing my meds a bit - and then decreasing them after I had her.