Epilepsy and Pregnancy

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Taking meds for seizures and wanting to get pregnant

Oct 2006

Someone close to me, who is 33, would like to get pregnant. She has a seizure disorder (diagnosed 7 years ago after 2 grand mal seizures) and is on carbatrol. Her husband and she have been trying for 5+ years to get pregnant but to no avail. After seeking out a specialist, the dr. advised going off her drugs completely under the advisement of her neurologist - which would undoubtedly force her to significantly change her lifestyle (i.e., no driving, etc.). Needless to say, this is worrisome. They are contemplating adoption but are leaning towards weaning off her meds in order to pursue IVF. I'm wondering if anyone has gone through a similar experience and can share any advice/insight? Other advice on local resources - doctors, seminars, books, etc? All insight is appreciated. Thank you Michele

You want information/and maybe advise about having epilepsy and being pregnant, in general? I have lived it two times. Medicated fully both times. I have yet to give birth to my second child. I am due in 2 weeks, but amnios and ultrasounds say everything is fine with baby. My first child is a handful, and we are totally blessed to have him. Epilepsy-wise, I know doctors (an ob, who I believe is a fetility doctor as well, who is very positive about treating me while pregnant and seizure disorder specialists), medications, personal feelings. One thing is that I didn't have problems getting pregnant, so I can't speak to that (that must be very difficult). But, I'd be happy to talk with your friend about my experiences WHILE pregnant(not all of them good, by the way. I have had a numeber of seizures while pregant which has been very scary) and pass on whatever I can to help. L
I am a woman with epilepsy and I've just had a beautiful baby boy in 2005. Here is my advice (in this order)
1) go to Stanford University Epilepsy Center - they are the foremost center on Epilpsy in the country and we have it in our back-yard.
2) Ask for Dr. Fisher or Dr. Morrell - they are the foremost authorities (Fisher is my dr)on the subject of reproduction, quality of life and epilepsy.
3) You don't have to get off drugs - I didn't - you just need to find the correct ones that have a proven record during pregnancy. You may need to transition off of what you are on now to something else.
4) http://www.itvisus.com/programs/hbhm/episode_401epilepsy.asp watch this vedeo on line (ps that's me and Dr Morrell) 5) Don't skimp on the tests - get an amnio -
6) Find a good OB that will listen to you and give you the facts streight and is willing to work with your Neurologist - I'll be glad to reccomend mine.
Seizures have a wide variety of causes and so the underlying cause needs to be clarified. There may be causes, such as neurotoxicity or autoimmune reactions to tissue structures, that might be addressed making the carbatrol unnecessary. I'm not saying that there is a cure, just that there are times with chemical, physical, or nutritional causes that impact the occurrence of seizures. Such things can also be related to the infertility.

I am curious as to what tests have been done related to the difficulty in getting pregnant. Of course, testing of free- fraction hormones in both partners is absolutely vital in helping to elucidate what might be the problem with pregnancy. Thus, thorough investigation of that, with the proper tests, is of importance in this case as well.

I have worked with patients with seizures and with difficulty conceiving, but not at the same time. However, there are some areas of commonality which I have mentioned above. Making sure that one also explores alternative approaches is prudent to cover all bases and potentially make the whole process easier with less drastic treatment choices needed.

One place to look for advice on epilepsy drugs and pregancy is the AED Pregnancy Registry, which ''is dedicated to determine the safety of anticonvulsant medications that can be taken by women during pregnancy to treat disorders such as epilepsy, mood disorder, and chronic pain.'' http://www.mgh.harvard.edu/aed/

I don't know how helpful it is for advice on anticonvulsants and getting pregnant.

I had two children while on Tegretol (the same as Carbatrol) and they did not have any defects, although I did take folic acid, which is supposed to reduce the chances. I also did not have problems getting pregnant, although I did reduce my dosage first (I didn't go off of it). Good luck to your friend someone with epilepsy

I gave birth to my first son in 2000-I was on phenobarb-something I had been on most of my life/due to epilepsy-stay away from valproic acid-its been banned in the UK for its high rate of spina bifida babies-Once I found out I was preggers I came off my meds-my doctor at Kaiser said most women didn't have seizures when pregnant-I restarted them at 8months-I figured sleep deprivation post baby would up my chances of a seizure-I chose not to breastfeed to avoid the transfer of a barbituate daily to my babe/we bonded great-I had a great big bouncing baby boy (9.1) I had an epidural and amazingly enough I had my first NORMAL EEG sixmonths post babe-my epilepsy was due to a frontal lobe injury sustained at birth(lack of oxygen) pregnancy brain in my case helped heal my disease-not as uncommon as it sounds. Baby number two was healthy also-I'm currently off meds and haven't had an abnormal EEG for 6.5 years. sydney

Want to get pregnant, worried about seizure meds

Feb 2006

Does anyone out there know anything about epilepsy and pregnancy? We are just beginning to think about having a baby, and I am overwhelmed by the risks. I am currently on Gabapentin (generic of Neurontin) to control my seizures, and my neurologist tells me that not much is known about this drug and pregnancy. He suggests I switch to Lamictal because it is considered the best for pregnancy. I'm terrified of any drug's affect on the baby, but obviously a seizure would be worse. I am hoping some of you have experience with this and can give me some good advice! Also looking for info on a good specialist to see. Thanks! nicole

would recommend you see a UCSF neurologist that specializes in seizures and ask them which meds are best in pregnancy. Neurontin is Class C and most OBs would recommend against it in pregnancy. C means that animal studies show adverse fetal effects or there are no animal/human studies better to find a class B medicine that controls your seizures BEFORE you get pregnant... another thought would be to find an OB that might know these things but I think the UCSF neurologist would be the best way to go. A pediatrician
I have epilepsy and took Tegretol during the pregnancies of my daughters, who turned out fine. I went through a lot of testing/agony before the pregnancies. I lived in DC at the time, and found a specialist I paid for out of my own pocket because my insurance didn't pay for it. But honestly, no one was really that much of a specialist, neither my neurologist nor a ob/gyn. In the end, after testing to see how likely I was to have seizures, I stayed on Tegretol (fairly high risk) but reduced the dosage and took extra folic acid since Tegretol put the baby at higher risk for neural tube defects. I also signed up for the incipient (at the time) anti-epileptic drug registry at Harvard/Mass General: http://www.massgeneral.org/aed/ which is ''dedicated to determine the safety of anticonvulsant medications that can be taken by women during pregnancy to treat disorders such as epilepsy, mood disorder, and chronic pain. '' and may help you determine your risk. I did decide it was more important to risk the defects than risk a seizure and for us it worked out. Good luck! --
I went through this very difficult time about 5 years ago. I was taking Tegretol, and was told by everyone that it was better to stay on the medication than have a seizure during pregnancy. Tegretol was associated with a slight increase in the risk of neural tube defect, so I took a lot of folic acid (10 times the RDA). In addition, I was given an extra ultrasound to check the health of my baby's heart. It was fine. It was hard for me -- I was scared the whole time -- but ultimately, I had a very healthy baby, who's now a completely healthy 4.5 year old. The overall risk associated with most medications is relatively small, though it is frightening to think about. I would recommend Joanna Cooper as a neurologist (she listens well, and takes extremely good care of you), with only one caveat -- she's very busy, and tends to be overbooked. However, I chose her because I wanted a female neurologist -- someone who had really thought about pregnancy, at least once. She had. Feel free to contact me if you'd like. Karen