Seizure meds and pregnancy :( How do you handle it?

Hello All,

So Im looking a few years into the future here, but its something that I dont ever stop thinking about. Last week I finally got up the nerve to ask my doctor if I can ever come off of my seizure meds. Already knowing the answer and fearing that the answer was going to be NO, I needed to confirm this with him. Well my fear became a reality and he indeed said that I will be on them forever. No I didnt mention to him that we some day want to try again. Save that for when we get closer. "Why fix something that isn't broken" he said. I completely agree and Im scared if I came off of the drugs I will end up having a grand mal at some point. Could very well be while Im driving the car with my son in it, sitting on the couch, while home alone or in public somewhere. As disappointed and sad as I am and was to hear that news I know its safer to stay in the medicine. Bummer I know!

Now here is my BIG question. My husband and I have been told for the last 6 years not to get pregnancy due to the AVM that its all to risky and we have listened. We have one son who is 8 and we are on the fence about starting all over again one day when the AVM is gone as he will be about 10 when we can TRY for another YIKES. But when I read about seizure meds it scares the crap out of me to get pregnant while being on them with all the POSSIBLE birth defects that can happen. Not to mention that fact that your meds are thrown off due to the rise in blood pressure from being pregnant etc.

Have any of you been on seizure meds while pregnant? What was your experience like? Any advice? I know with being on seizure meds your are automatically consider a high rick pregnancy. Was that scary? Its a lot to gamble with and my husbands big hang up right now is the AVM which I understand. So I dont (well try ) push having a baby on him. But now with this new info his new hang up is the meds and birth defects and everything along with that. How did your husbands/significant others handle it???

Thanks for any advice and this is all just to help us. We are still years away but I like getting to "study"information so we can really make the best decision for us. Weighing all the pros and cons to the situation :)

Thanks again
~Andrea ~

I've been on seizure medicine, Tegretol, since 1996. I started taking it about the time my son turned 10 mos. In 1999 our second baby was born. I was terrified that the medication woul have serious effects. Yes I was considered a high risk pregnancy partly because I had the history of the AVM. But she was fine and is now a healthy, active 13 year old. She came about three weeks early and was very tiny but dr's couldn't say for sure if it was due to the medication or not. I had to see a perinatologist as well as