To draw your attention to this absolutely shocking medical scandal...

[Tenegrief]

I heard about this because I know someone who has been affected. Posting here for traffic.

All the terrible details are in this Guardian article:
https://www.theguardian.com/society/2024/feb/22/the-mothers-fighting-a-scandal-bigger-than-thalidomide-we-were-told-the-medication-was-safe
But, in summary, pregnant women with Epilepsy have been prescribed a drug which was known to cause harm to babies in the womb. Despite the drugs company, NHS and government knowing about it for a very long time, and regardless of the tireless campaigning of the people affected, the drug has continued to be prescribed with often devastating consequences. The article above states that an average of 3 babies a month are born affected... So, if you know an epileptic woman who is TTC or pregnant please make them aware.

My eldest is 25. I was on epilim from the age of 17 to 43. All through my child bearing years. Neither my GP, my neurologist, my midwife or the obstetrician warned me about that medication that I was taking. They took me off it at 43 'just in case you get pregnant'.

God this makes me angry. The decision my brother and his partner had to make was utterly heartbreaking.

I also work in mental health, not in prescribing or even clinical but I do deal with patient safety alerts and can confirm the guidance around contraception/not being given to women of childbearing potential has been around for years (and been followed to the letter in my area at least)

Not SV but I was prescribed topiramate (another epilepsy drug) for alleged EUPD - turns out I’m autistic so it didn’t help but regardless I was told absolutely not to get pregnant under any circumstances and if an accident did happen I would have to terminate the pregnancy.

I had no idea this could possibly affect children through males as well. I don't think my son was given any warning about this.

Is this a very new requirement? My son was prescribed Epilim by a single consultant two or three years ago.

Yea guidance for males is new this year
This risk (for males) was not known about 10 or even 5 years ago.

@PauliesWalnuts @Rarewaxwing please note the dates on the articles. That warning was issued in 2023. Lots of information on medicines comes to light in the post-marketing period, clinicians don't (generally) set out to cause harm but it's impossible to do trials in pregnant women due to ethics, and difficult to do trials on paternal exposure due to numbers/timing of conception/follow up period needed to identify developmental difficulties.

I remember my Mum's friend talking about this in the 80s. She was epileptic and had been told that if she wanted to conceive she'd have to come off the medication for at least 6 months beforehand.
She had come to ask Mum if she would check on her because her husband was going to be away for a couple of nights and she was scared about fitting on her own.

@innerdesign - thanks, that makes sense. I did wonder about the impact on males at the time Epilim was prescribed to DS, but pushed it to the back of my mind because getting his epilepsy under control was a priority. I'm glad I'm aware of the possible risk factors now, however.