|
|
I've got a question for the women who've had pregnancies on AEDs. A little while back, I'd posted asking about taking Lamictal during prenancy. I just saw a new neuro, and he thinks that my seizures may be JME that's gone undiagnosed. He's chosen to take me off of Lamictal and start Valproic Acid. I was getting poor control on Lamictal, and had scary side effects after seizures. He's said that while the risks associated with this new drug are at the higher end of the spectrum, I'll likely have a good pregnancy and a healthy baby. My target dose I think will be 1500mg/day. Anyone have kids while taking this drug and have a good outcome? Please say yes. I really want to have another child. I'm looking at a 6 mo. wait to see if I get good seizure control. Any input would be appreciated. Thanks.
Recent Comments on this Discussion
I started having seizures at age 16 and these were not properly diagnosed as JME until about 25. During that time I tried most every medication on the market and Depakote was the only one that controlled the seizures reasonably well. I got pregnant on Depakote, assured by my neurologist that it was ok. At the time, I was in my second year of neurology residency and agreed with him (weighing risks vs benefits). In my experience, it was not a good choice. My son was born with trigonencephaly (misshaped head with fused sutures - required extensive surgery at 4 months), persistent fetal circulation, a hole in the heart, very rapid heart rate and hypospadius. We almost lost him. I had a GTC seizure while giving birth and had a crash C-section. Obviously this is an extreme example and my little guy got all of the possible adverse outcomes. He is 10 now, healthy and strong. He is developmentally delayed and still has occupational therapy twice a week, but can read, write, etc. We feel very blessed to have him and consider him our little miracle from God. My second pregnancy I went off Depakote totally and changed to Lamictal. Although the seizures were not fully controlled, I had a very healthy little boy. Afterward, I went back to Depakote (plus Lamictal) with complete seizure control. I am now a neurologist and have been in private practice for almost 10 years. I always tell my patients about my personal experience with Depakote and we try alternatives before going with the Depakote. You can have a healthy baby on Depakote, but you are significantly increasing your risks. Not many neurologists have epilepsy and probably even fewer have JME. From my professional and personal experience, try to avoid Depakote and work with you doctor for a better choice. I did.
Valerie
Valerie,
Thank you for your post! I know what you went through. I was taking Depakote ER during my second pregnancy 1000mg and my son was born with many congenital abnormalities (trigonocephaly, undescended testes, hypotonia, long finger and toes...) He underwent extensive surgery at 9 months to correct his forehead and 3 more surgeries to descend his testicles. Now he is much better but still have speech delay. After what my son has been through we decided to get off medication for our next pregnancy which we plan in a very near future. I am extremely scared since Depakote controlls my seizures very well (I have grand mals) but don't see any other way. There are no guarantees that Keppra will be safe at the same time nothing can be worse that Depakote and I am extremely sad that my previous neuro didn't tell me all side effects from Depakote.
How is your son now? How is his head (as far as shape)? Here is my e-mail if you would like to contact me directly natalie0307@yahoo.com.
Natalya.
This may seem like an odd question, but what did you consider reasonable control for your seizures? I seem to be having monthly episodes lately during the week I ovulate. They also tend to cluster 2 or more per night; especially when I'm stressed &/or overtired. My seizures are all GTC and nocturnal in nature. I have a few jerks and the odd absense spell during the day. Like you I've tried several different medications, the last of which was Lamictal as I really want to attempt a pregnancy. I couldn't handle the side effects. Especially when I'd have seizure activity. Very scary. I'm currently on Depakene which my neurologist led me to believe is safe. I take extra folic acid, and have been taking a prenatal supplement. I told him that and he said that was fine.
My last seizures were a couple of weeks ago, and over 2 nights I had 5 seizures. This has prompted my already nervous spouse to now suggest that we not attempt a pregnancy. I'm feeling a little blind-sided. I still hold out hope that I can have a successful pregnancy. Anyone have any thoughts?
Daphenne
I was diagnosed with Epilepsy at age 16 and was always told I would be on medication for the rest of my life. When I found Depakote ER, I felt like I had hit the jackpot... Although it caused me to gain about 20lbs, I felt pretty good and NO seizures for almost 7 years. My husband and I wanted to have kids early because we knew that the risk of defects would be the lowest. When I got pregnant with my son, we were referred to a geneticist, which scared me as no one had told be beforehand how likely birth defects would be specifically with Valproic Acid. Luckily my son is perfect and smart and healthy, and 4 1/2 now. However, after he was born I switched Neurologists because I was disappointed with how poorly informed I had been. My new neurologist switched me to Lamictal (Lamitrogene--sp?) and SURPRISE! I got pregnant-- probably in the same week I started weening off the Depakote and onto the Lamictal. My daughter turned out fine as well, but we would never take that risk again. We are done having kids because we feel we dodged a bullet-- twice! We did a lot of tests and several extra ultrasounds, although I don't know what we would have done if we had seen any problems. Overall, if you want kids, I guess the risk is worth it and I wouldn't change anything that we had done.
I had a beautiful, healthy baby boy in 2005 while on Valproic Acid. He is now a perfectly normal 3 year old. We have had no problems as a result of the medication. I took 4 mg. of folic acid per day and my Valproic Acid was gradually increased throughout the pregnancy as I had blood tests to check the levels.
It was a very stressful pregnancy as we worried the whole time whether baby would be ok. I had an extra ultrasound to check for defects and a test to check baby's heart...
I would love to have another child, but we are probably going to just call ourselves lucky and stop at 1. I am allergic to almost every other epilepsy drug so there are not a lot of other options for me.
Thank you for replying. I've been making myself crazy with worry. Don't get me wrong, I trust my neuro's opinion. It's just that everyone's experiences are so different. I am taking 4mg of folic acid/day, plus a prenatal multi as we've been in the "planning" phase for months now. There's another mg of folic acid in that, so that's a total of 5mg. So far things have been going pretty well. I'm almost completely off the Lamictal, and in 2 weeks will be totally on the valproic acid. Any suggestions for dealing with the fatigue? I am ALWAYS tired. Also I'm getting really impatient. I know that 6 months really isn't that long to wait, but right now it seems like forever. I know that the most important thing is to make sure that my szs are well controlled, etc. I'm not good at waiting.
Out of curiousity, what dose of valproic acid were you on? I haven't gotten levels done yet since I'm not on the loading dose yet, but was just wondering. Thanks again for your reply. I feel so much better hearing from someone first hand. Enough babbling from me. Sorry.
At that time, I think I was on 250mg of V.A. 3 times a day. I now take 500 2 times - it is just easier to take twice a day...
I know what you are talking about with the fatique. I know I need my rest - always going to bed early if possible. And I nap whenever I can - when my son naps which is almost never now that he's 3!
I worry if I could handle the sleeplessness that comes with a new baby if we were to have another one. Most importantly, I think you have to take care of yourself first so you can take care of the baby.
We are still undecided on whether to try it again... looking into adoption as well. Feel free to ask any questions. I know how hard it is to find someone in the same situation.
im not taking that med but i do have epilepsy and just found out i am pregnant.
here is an interesting site to take a look at that some of you might find helpful or interesting :)
http://www.seizures.net/articles_epilepsy/Epil_Preg_text.html
HI,
I have epilepsy (JME) and had a healthy son 2 1/2 years ago. I was 38 at the time and taking 1000mg of Valproic Acid. I was referred to an epileptologist who recommended 4800mcg of folic acid. Which I took, of course!!! That is 6 pills at 800mcg. Be careful when shopping, some pills are only 400 mcg. As I said, he is perfectly healthy. We had the various ups and downs of pregnancy and I was scared out of my mind.
I would like to get pregnant again - he is such a dream child. I am currently weighing the pro's and con's - I am 41 now and I have SO much at stake. A great family already and I am older and on depakote. I am not convinced that switching to another medication is wise for my case....although Lamictal sounds tempting. I just do so well on depakote - no weight gain or any real problems from it's use.
email me if you want to talk - I can tell you some things I would do differently after my little guy was born...firstborns can be nervewracking!!!!
Well, my son is telling me take my slippers off - I guess I'd better go. marapower@hotmail.com