Hi Kate,
I was 29 when I became pregnant with my daughter. At the time, I had epilepsy for 14 years. I am now 34. I was on BCP for 6 years prior to becoming pregnant. I went off of them, and after 1 full cycle without them, I became pregnant. I took folic acid and pre-natals for 3 months before we TTC. Once I became pregnant, I continued to take them in addition to Expecta (helps with brain development).
I took (and still take) 75 mg Lamictal bid and 100 mg of Lyrica bid. I had not had a grand mal seizure in 8 years when I became pregnant. I occasionally had a petit mal of like 2-3 seconds but only when stressed. I also saw a perinatologist (sp?) and had many 3D ultrasounds. When I was maybe 7 months along, they were talking about inducing me because my daughter's abdomen was only at the 3rd percentile. Since her growth was fine otherwise, I decided not to do it. She ended up being 5 days late and I was induced.
I decided to stay on meds, because they were in pregnancy risk category C, and I knew I would have a seizure within a few days of stopping them. I was told that women who have epilepsy have a 5% chance of it improving, 50% staying the same, and 45% chance it worsens during pregnancy. I was part of the 5%. My petit mals were gone completely. (I think they may have returned recently though, I'm not sure).
Despite all of the careful monitoring, tests (I did not get an Amniocentesis despite my gyn and neurologist wanting one), and vitamins, my daughter has a birth defect. However, it is not attributed to epilepsy or my medications. We're not sure where it came from but the known causes are nothing I or my husband did. It is actually thought to be a complex gene mutation of some sort (microtia) according to one of the Drs. I spoke with who is researching it.
In any case, if you do decided to have a baby, please consider participating in the AED pregnancy registry.
http://www.aedpregnancyregistry.org/about.htm
Best of luck to you!
Kristy
--- In epilepsy@yahoogroups.com, "keepsmiling1023" <dorisellen@...> wrote:
>
> Hi Kate,
> Super special time of your life, wish you the best. I
> began my epilepsy, age 18 and I've had it for 51 years now.
> I had two children, both boys, and never went off the drugs.
> My second son was on drugs for epilepsy for ages and almost
> two years ago he passed away in his sleep at 41 years old.
> It might be worth it considering adopting instead of pregnancy
> since then epilepsy would not continue in your family. Just
> food for thought. I had left temporal surgery almost 14 years
> ago, and my seizures during the day completely stopped, however
> seizures when asleep began and I still have these a couple of
> times a month and I presently take Lamictal. I wish you the
> best of all concerning this and encourage you to keep us
> updated as we understand the feelings behind your inquiry.
> Take care.
> Sincerely, Doris
>
> --- In epilepsy@yahoogroups.com, "katebruer" <kbenda83@> wrote:
> >
> > Hi all,
> > I am 29 and medicated for ep, hoping to start a family. Just wondering what your experiences with epilepsy and pregnancy were. Please feel free to email me off list if you prefer kbenda83@
> > I have had epilepsy since age 10, currently taking 1000 mg of keppra daily. Did you choose to go off meds or stay with them for pregnancy?
> > Did ep make conceiving or pregnancy more difficult? What were you experiences? What worked/ didn't? I am willing to go off meds even if I can't drive. Going to the neuro next week, just trying to figure what's the best choice. I am working with a high risk ob and hospital. I have few seizures, 100% controlled by meds. When I did have seizures, it was because of fevers, diseases or medications- almost always while living overseas. Back in the US now, planning to stay for the foreseeable future.
> > Thanks!
> > Kate
> >
>
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