Have Epilepsy? Take Epilim? Come talk to me about risks in pregnancy...I'm worried!

[Tobermory]

Am 11+4 with DC2. Just been for my appointment with consultant and have come away feeling quite worried.

Im a worrier anyway and to be told about the 1:100 chance that there may be somethign wrong with the baby due to the Epilim has left me a bit paniced. I knew from pregnancy number 1 that the medication had risks but the numbers werent made as clear - or did i ignore them?!

I know 1:100 means that 99 women out of 100 will go on to have babies with no abnormaltities, but stil........

Words of wisdom please!

...someone must know?!

I don't know but just wanted to say hi & that i hope someone who knows better comes along soon.

According to this Epilim is worse than other drugs, can you change?
(though still a low risk)

Yes i know its fairly bad on the spectrum and i knew that when preg and TTC, just right now panicing a bit!!! A bit irrational and a teeny bit late now too!

just phoned my sister who is ttc. she has been put down to 800mgs; you should be on less than 1000mgs, then as you say, chances are tiny of abnormalities. you have to worry when you are pregnant, to prepare you for a life of worry

Try not to worry as there isn't anything can be done to change the past. As I understand it the main risks are up to 12 weeks gestation as that's when the spine is being formed, since you are almost there it may not be necessary to change medication.

Did the consultant suggest reducing your dose at all? I'm surprised they didn't talk to you about it before you ttc.

I was on Topamax and was banned from ttc until I'd been off it for 2 months. I'm still worried it may have affected my current pg so will be asking for a scan at the first opportunity to check everything is ok.

Ive been taking fairly large quantities of folic acid(5mg) daily and was doing this before i conceived, which is a positive thing esp during the first 12 weeks when, as you say norky, the spine is forming.
I did reduce my epilim before TTC DD1 from 1500 to 1000 mg ( although my average intake is much less than this as i forget fairly regulalry). A rubbish thing to admit i know but have been fit free fro 18+ years and......

My sapphire nurse has been impossible to get hold of. I have been tryign since early this year but she doesnt return calls or messages so havign another conversation about it has been impossible. She has a fairly lackadaisical approach to everything, lovely lady but ditzy, havign been unable to contact her I had to get my folic acid from GP in the end.

Sodium Valporate is not a great drug to be on whilst pregnant. Maybe you should consider a second consultation just put your mind at rest.

Tobermory, I had ds while on anti-epileptics but my consultant had put me on Lamictal back when I developed epilepsy in the first place - his view was that any woman of child-bearing age should be on a drug that is not known to be linked to birth defects. (Of course, there may be new research about Lamictal since I had ds 6 years ago, but at the time it was considered a safe-ish bet and luckily ds was fine.)

Am a bit surprised your docs have you on epilim - is there a reason for this? Have you tried other drugs but they didn't suit you?

Anyway, that's all bit irrelevant now since you are p/g. Folic acid should indeed help - forget what I was taking but several times the standard recommendation for other healthy women.

Impossible not to worry but try to focus on the 99%, not the 1%. Oddly I felt much better after the 12 week scan, even though you can't really tell at that stage.

Had a 'check everything is ok' scan at 9+1, and another at the weekend for nuchal.

Am feeling a bit more zen like now ( after admiring Take That on tv!)- what will be, will be. The folic acid is being taking religously, things will be fine says DH!

Glad you are feeling a bit better.