Epilepsy & Pregnancy

[msbolt24]

Hello. I am new at this! Could someone help me? I am looking for some useful information--from ladies who have been there and done that! First I will tell you that I want a child. My husband and I had a son nine years ago but lost him to SIDS. I received no prenatal as I had no idea I was expecting; I was three months into the pregnancy and suffered a massive brain hemmorrrage (AVM). As a result of that, I received lots of medication for seizures; I have often blamed myself for Taylors death because of the amount of medicine that I did receive. Now, I am taking six hundred miligrams of Trileptal twice a day and have been seizure free for all this time. Does anyone know what risks to a fetus this type of med and the amount might have?

[UroDoc]

Trileptal is designated a category C risk for pregnancy. This means that you should use caution when taking this medication during pregnancy since it has potential risks. However taking the medication may out weigh these risks. As far a risks goes there are no human studies, but animal studies have shown some harm. Best to talk to your doctors about this, good luck.

[msbolt24]

Thank you for the reply! Unfortunately, I have already been given this advice and have spoken with my doctor. He has directed me to a starting point, which is with a neurologist . What I am really looking for is advice from someone who has had children while taking Trileptal and can give me first-hand knowledge of their pregnancy and also their children.

[UroDoc]

I hope someone replies, good luck

[msbolt24]

Thank you again! Would you happen to know of any "good" resources on the web for information?

[tjbmom]

I'm not sure if you check the replies on this anymore, but I am in your situation. I had two healthy babies before my brain hemmorage. I had a cavernous malformation that was removed in 2005 when my second child was 8 months old. I have had seizures ever since. My husband and I had a hard time deciding to have a third baby, but after prenatal counseling with my OB, Neurologist, and Perinatologist, we decided to go for it. I am now 5 months pregnant and, like you, I'm on Trileptal. It has worked wonderfully up until now. The Perinatologist has kept a close eye on the development in regards to the medication, and our little boy seems to be developing normally. I have began to have break through seizures in the past few weeks due to the increase in my blood flow. My meds have been increased and have made me a pit loopy. It's not an easy pregnancy but I'm glad we took all percautions and have a healthy baby so far. I'm not sure if this helps, but I wish the best for you and your husband. Good luck!

[msbolt24]

Thank you so much for your input! And congratulations on your next pregnancy! It was very hard losing Taylor almost ten years ago now--I would be so grateful to have another and be in your situation. I was pregnant with him when I had my brain hemmorage; it occurred in my frontal lobe area--the cause was an annivenus malformation, so I'm not sure how similar our injuries were. Hey, if you have any additional information for me, please post it! Again, thanks!

[tjbmom]

I forgot to tell you about my med levels. I started on the same dose as you. 600 in the morning, 600 at night. July 2007, I had break through seizures and was increased to 600 3 times a day. My blood levels during pregnancy have raised in the past two weeks and after 4 months of being seizure free, I have had 3 seizures within those two weeks. So, my meds were raised again to 900 in the morning, 600 in the afternoon, and 900 at night. If it gets worse, they may change me to a different medication. The good news is that the meds do not look as if they have caused any problems in our little boy. His brain, spine, and mouth are developing as they should. If the meds were to have caused problems, it would have happened in the first 3 months of development. Choosing to get pregnant again was one of the hardest choices for me. I didn't know if I could face our childs questions if he had something wrong with him. I knew that if he did have something wrong, it wouldn't be by accident; it would be because of MY choice. I know now I can face that if it happens because I love him and he will know that. I know there is risk, but my husband and I decided to take it. Whatever happens, we feel it's what we signed up for. It's such a personal decision to make, but for us, we know that children, even if born totally normal, bring happiness and sorrow. If this baby is born with problems, he will still be ours, and like our others, I'm sure the happiness will out weigh the frustrations. I sure hope this helps. Maybe not. It's so different for everyone and sometimes, it's just too hard to take on. Know that whatever your choice is, this perfect stranger supports you and TOTALLY understands what you are going through.

[msbolt24]

Wow! I wouldn't have believed a "perfect stranger" would be so supportive and kind; I must again extend a heartfelt thank you for all of your information--it helps me with my decision. As for my seizure situation, I have been seizure free since 1998; all my MRI's still show that I need some medication (last scan was three years ago) but I am pretty healthy! Like you, I started Trileptal at a different dose--1800 mg a day; I now take one pill in the morning and one at night. Even when I was on dilantin, I never had to have an increase. Of course, I am not pregnant.

[tjbmom]

I think our injuries must be very similar. Mine occured between on the left side between the frontal and tempral lobes- in the speech and comprehension area of the brain. I too started on dilantin, but it didn't work for me. Just a few more things about what I've experianced. No neuologist will want you to be pregnant. What matters is if you want it. Find a supportive OB and perinatologist. Go before pregnancy to all doctors. Get on whatever meds the neuro finds most compatible w/pregnancy. Talk about all risks w/ the perinatologist. We thought there was a very high risk of about 10-15% that our child would have a disability, but after talking to the professionals, the risk is actually between 1-3%, which is about the same risk that almost everyone has. I see 4 doctors. My Nurse Midwife (who dilivered my other two in the hospital), the regular OB that works with her, my neuro, and my perinatologist. I have ultrasounds every 4-6 weeks done by the perinatologist. I see my midwife and OB every 4 weeks and my neuro every 6 weeks. It's expensive and takes a lot of time (with all the appointments) but I find it's worth it. I have never found anyone else that has gone through what I have, and very few people really understand. I am very happy to tell you what my experiance has been like. I know that you must be a very strong person. You've gone through a near death experiance yourself, the recovery of that, and the loss of your son which must have been beyond anything I have ever felt. You can do anything. You can do this.