New to Forum & Wants to Start a Family...

[LuvlyWendy]

Hi All,

I had only 2 seizures back in November 2005 and they were in the same day. I was young and just stopped smoking some weed at the time. I was smoking all the time back then and it was weird how I had my seizure like a day or 2 after I stopped. My doctor said it had nothing to do with it, I doubt it tho. I wasn't officially diagnosed because they were in the same day but I have been on meds since then. I started off with Keppra then switched to Zonisamide for the weight loss side effect which was awesome! Anyways...I got married in June 2009 and am coming up to our 2nd anniversary really quick. We would like to start a family but with my medication, it is not as easy as most couples. I can either stay on my medication and risk potential birth defects or get off the medication. My doctor suggested I get off my medication about a year ago, he feels with my situation and medical history he is confident that I won't have another one. I am so nervous because I heard your change in hormones during pregnancy can cause a seizure and what if that happens? I also want a healthy baby too. The part that bugs me too is if he takes me off, I can't drive for like 6mo I have an ideal situation for that tho, I work where I live and can literally get by without driving to work. I am only on one medication, I heard the defect rate goes up when you are on more than one type of medication. Was anyone else pregnant on medication, Zonisamide specifically? Or what is it like to get weaned off?

[techtome]

The safest thing to do is come of the medication and work with your neurologist in establishing a timeframe for pregnancy. There is a reason why 6 months is a standard for returning to driving and that might be a reasonable timeframe for you also. Be prepared for an EEG before coming off the medication and an EEG soon after. Birth defects are very likely on the medication especially in the first trimester. If your seizures are uncontrolled off the medication that is a great risk for the baby as well. Following a careful short term plan can prepare you for long term success.

[tase37]

I hope that the best solution will be found for you soon..

[Nakamova]

Hi LuvlyWendy, welcome!

It's a good idea to get your neurologist and OB GYN on board to help you weigh the risks of seizures vs. the risks of the birth defects. It's tricky because Zonisamide hasn't been studied as much as some of the other anti-seizure medicines. There isn't enough information yet to be able to estimate the risk of various types of birth defects that might occur if it's taken during pregnancy. It also might be problematic during breast-feeding because of the possibility it may cause metabolic acidosis in the baby.

I would agree that it's worth trying to wean off of the Zonisamide to see how you feel. Given that you've been seizure-free for 6 years, and that you only had the one set of seizures before going on meds, you are in a good pace to give it a shot. It's always a good idea to taper off anti-epileptic drug meds slowly -- in most cases, going slower can't hurt, and it can help to allow the body to adjust to each level of dosage as it decreases.

If you do decide to stay on the Zonisamide, you can't eliminate the risks entirely, but you can reduce it by using just the one drug, and at the lowest possible dose. And you should take a folic acid supplement each day to help prevent birth defects, whether you stay on meds or not.

I wish good health for you and your family.

Best,
Nakamova

[gigi]

The lesser of two evils would be staying on an anti seizure medication through a pregnancy. You do not want to have a seizure while pregnant. As a Mother of two grown children, I spent my pregnancies on the anti seizure medicine; Dilantin. My children were big healthy babies, and continue to stay that way (22 and 28 years old). I also breast fed both of my kids.

To off set the medication, take vitamins and eat healthy foods, especially non processed foods. Eat Organic.
As far as your doctor making pronouncements like suggesting you get off medication because of your situation and medical history - and that he is confident you will not have another seizure. That remains to be seen. So, you might hold off on family planning until you see if you can truly be seizure free w/o meds. Change in hormones can be a trigger for seizures, we all have triggers that vary from person to person. Make sure during your pregnancy you are diligent about yours and your baby's health, be your own best health advocate. Good luck!

[KimberlyD]

Whatever your decision is make sure you are comfortable with what the doctors are saying. Get second or even third opinions if you don't like what the first one says.

With my oldest son I was on Depakote and Tegretol. The first doctor I went to told me I needed to abort him and even made me an appointment for the abortion without my knowlegde. He told me to go in the back door of the clinic to keep away from the protestors. He told me my son would have spinal bifida and would be mentally retarded (never walk or talk) because of the Depakote. I left his office and went to see another doctor...that doctor told me to stop taking the Depakote and stay on the Tegretol. I did that and my son is now 16 yrs old 6'2 and plays baseball, football and basketball and has an IQ of 129. I have had 4 children since him on the tegretol all are seizure free and healthy.

Go with your heart, it will lead you in the right direction.