Any Mom's Out There with Epilepsy?

Updated on February 02, 2011
P.B. asks from San Ramon, CA
13 answers

I had my first grand-mal seizure at 33 years old while 8 months pregnant. My pregnancy was then considered high risk and weekly monitoring was required. Everything turned out fine and I have a beautiful son. I was prescribed an anti seizure medication which I stopped taking shortly after my son was born. 8 months after the first seizure I had another. At this point my Neurologist ran additional tests and I was diagnosed with Epilepsy. He put me on a different medication. Still in denial about my condition I stopped taking my medication this December, and last weekend (1 year after the 2nd seizure) I had a third grand-mal seizure. All seizures have occurred during my sleep. I am back on my meds, but I would like to have another child. Are there any moms out there who have gotten pregnant with Epilepsy who are on/off meds? Any information or advice you can provide is greatly appreciated.

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L.L.

answers from Sacramento on

I do not have this condition, but my heart goes out to you. There has to be some books out there that could give you some helpful information. Also perhaps researching the internet could help too. May you have a good remainder of the week.

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O.G.

answers from San Francisco on

Hi P.,
Although I do not have Epilepsy, my mother-in-law does and has for 50 something years (before the new information and treatments they have now) and she delivered 4 wonderful healthy children.
There is nothing wrong with taking meds for your condition and having a family, just listen to your doctor and take the best possible care for yourself oh, and if possible, gets someone to help on occasion with the child(ren:)) to help relieve stress.

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S.B.

answers from San Francisco on

Hi P.,

I don't have epilepsy but my daughter does. She had her first grand mal seizure in church. The paramedics came and took her away during the service. She had started birth control pills and the seizure seemed to be related to hormones. She didn't continue the seizure medication. The exact history is best gotten from her. You could contact me and I'll see if she is willing to talk on email with you. She had a second grand mal while bathing. Later she found out that she was pregnant with her first child. She was on medication for that pregnancy and then stopped the medication. She has had 2 more babies since then. I think that she takes the seizure medication durng the pregnancy. After baby 3, the neurologist told her she was having small seizures and needed to be on the medication regularily. Since she doesn't want to have seizures and put her children at risk she accepts the fact that she has epilepsy and needs the medication. Her boys have been fine even though she was on medication even when breastfeeding.
S. ###-###-#### or mybreastfeeding.com

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D.L.

answers from Stockton on

Hi P., I am a mom of two grown children, one is 32 and is handicapped, my other daughter is 25. Anyway I do not have seizures now but I did as a child. Whatever you do DON"T go off medication on you own, it has to be controlled and slowly taken off and your doctor has to say it is ok. Having seizures in you sleep can be serious so for your child's sake please stay on your medication. Your child needs you!
As for getting pregnant while on medication you need to talk to your doctor about that. You need to find out how your medication can effect a embyo and fetus.
I hope this helps you.
D.

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N.K.

answers from San Francisco on

Dear P.:

First off I am sorry you are having to face such a difficult and life changing situation. My name is N. Knowdell. I am thirty-three and have had epilepsy since I was ten years old. I began having seizures when I hit puberty. I had a son in December 2006. I am very aware of how hard it can be to have a child and have epilepsy. I had been seizure free for tweleve years prior to my pregnancy and had been warned that due to hormone changes and increased blood flow to the baby that I could start having seizures again if I got pregnant. I had a seizure when I was about five months pregnant and then another the night I came home from the hospital after delivery. I cannot imagine how difficult it would be to have to first experience this now rather than dealing with it for as long as I have. Please feel free to call me if you like. My cell number is ###-###-####. I would be happy to talk with you and tell you as much as I can about the different meds that are safe to be on while pregnant and any other info that might help.

Hang in there and I hope you will call, talking to other people dealing with epilepsy really helped me. I hope I can pass that help along to you.

N. K. :)

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M.D.

answers from San Francisco on

P.,
I am not yet a mother but look forward to motherhood in the near future.
After a near death car accident in '89 I was diagnosed with epilepsy after my head went through the windshield at 60mph.
It took me years to figure out my body's chemistry, including menstrual cycles and medication, which I am happy to share with you.
I had seizures in my sleep as well. They started out as Petite Mal and then turned into Grand Mal as I got older.
I was on Tegretol 200mg, 2X/day to keep my seizures from happening daily, however they still came the week before and of my period.
My mother chose this medication for me (as I was 12) because it had the smallest chance of birth defects at the time, 3%-5%, where others were at a 35% chance.
I started experimenting on my own in my early twenties, with birth control pills and starting a new package the week I should have had my period, therefore never cycling.
I told my neurologist what I was doing and she approved of it as I was able to fight off seizure for between 2-5 years at a time.
I am now on Tegretol XR/CR, (meaning extended release/ controlled release, which means the medication goes into and exits your system more slowly to keep you as balanced as possible all the time).
I know you are trying to have another child and you ARE at "high risk" and will need to be under the close supervision of your neurologist throughout your pregnancy. DON'T MESS WITH THE MEDS they tell you to take!!! You can be at risk of having a heart attack, which a friend of mine died from at age 20, or cutting off the oxygen flow to the baby, when having a seizure. Try not to be in denial even though it's embarrassing and frustrating.
Honestly I am afraid of getting pregnant or trying, because that means I would have to discontinue my birth control method of remaining seizure free.
The things that triggered them for me was my period, high stress, not enough sleep and sometime even the television with the flickering of the lights.
Maybe my personal system will work for you too, after the second pregnancy, but ALWAYS ask your doctor.
I'm sorry I can't help you with advise in trying to get pregnant, but I saw your post and felt obligated to share.
If you would like to contact me I would be happy to talk with you further. My email address is [email protected]____.com if you would like to exchange phone numbers, we can.
Blessings to you and your family!!
Very Sincerely,
M.

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A.B.

answers from San Francisco on

I can understand your apprehension. I too have a seizure disorder. I have 4 children and the last 2 were carried while I was on meds. It can be done. Your going off your meds will not help. It is better to stay on your meds while pregnant than to have a seizure. If you are monitored during your pregnancy and take extra folic acid, it can be done safely. I also nursed my kids. I continue to be on meds. You do not want to continue to have seizures and then risk having your driver's license revoked. That is another set of concerns. Good luck!

I am a mother of 4, ages 13, 10, 7, and 4.

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K.T.

answers from San Francisco on

Hi there I have had epilepsy most of my life and have a 2 1/2 year old daughter - im now 40. I spoke to my neurologist before i started trying to get pregnant and he advised that the tablets i was taking then (phenetoin) put me at a higher risk for having birth defects in the child. I had to phase these out gradually and change onto Lamictal which is considered "cleaner". Only then did i get pregnant. I considered coming off my meds before trying but the neuroIogist advised against it. I hadnt had a seizure in over 15 years until i went into labour and they gave me the pain-relief drug pethidine and then i had a seizure in the delivery suite. We were both ok thankfully. I had checked with my obs before i went into labour if any of the pain relief drugs would react with my epilepsy meds or had a higher risk of causing seizures (because then i would have used alternatives). They said no and gave me the pethidine which caused the seizure. I later found out that there was definite evidence that this drug can cause seizures if you are susceptible to them and then was really angry!

My advice would be to check with your neurologist about having you on the drugs that are most suited for women trying to get pregnant and get the dose right before you get pregnant. I also had to take higher levels of folic acid (5mg) before and during pregnancy. Check out this website for information thats direct and clear:
http://www.epilepsy.org.uk/
also this is the link to the women and epilepsy section which includes info on planning a baby. I found it to be a invaluable resource and wished i had more time to read it thoroughly before i went into labour. They say to avoid pethidine.
http://www.epilepsy.org.uk/info/women/planning.html

ps i gave birth to my daughter in uk - i dont know what the american drug equivalent of pethidine is - i checked a website and they say "in the United States and Canada, it is more commonly known as meperidine or by its brand name Demerol."! Hope this helps - Good luck - K.

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C.S.

answers from San Francisco on

Hi there,
I hate to be the bearer of sad and terrible news. I don't want to bring you down or be a pessimist. But you are very blessed. I hope you can grasp the enormousness (if that's a word) of just how blessed you are. My friend wanted a baby so badly but she had to be on meds for her epilepsy ALL the time. I don't know if she was thinking she could be off of them long enough to get pregnant or what exactly was going through her mind but she suffered a bad seizure and somehow died during it. Her husband came home from work and found her. I'm not saying this is going to happen to you or even that it COULD happen to you. I still don't know exactly how or why she died. I'm just saying you are so lucky and blessed to have epilepsy AND a child!! I wish my friend could be in your shoes.
That's all.

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A.M.

answers from Sacramento on

Hello,
I am a 24 year old stay at home mom with a 4 year old boy and a two week old baby girl. I have epilepy and have had it for most of my life. There are safe medications that you can take while pregnant and it is very important to take your medication especially because you take care of your child. You never want to put yourself or your child at risk. Both of my children were born healthy, and I now currently take Keppra. While pregnant with my fist I thought it would be safer to stop taking my meds for the first 3 months but while I had no seizures (luckily) I found out I actually put my baby more at risk because if I were to have a seizure, I would possibly hurt my unborn child. Talk to your neurologist about which would be the safest medication for you to take, and make sure you have them under control before trying for baby number two. I will admit, it is always scary, but the chances of defects are like a 1%. Always make sure you get enough sleep because lack of it and stress can bring on seizures. Also if you are very sleepy and take hot showers early in the a.m. I have heard that can bring them on also. That had happend to me in the past. Not taking your meds will def. mess with you. Once diagnosed with epilepsy, you just really have to except that you need the medication, and remember to take it. You never know when you might have one, you could be driving, or anything like that, and eventually you could loose your license for 6 months or longer. So good luck, and you can totaly live a normal life if you just take care of yourself. Hopefully I have been some help!!! Take care!,
A. :-)

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M.M.

answers from Sherman on

I have had seizures all my life... I wasn't diagnosed until I was 17.. I only had seizures in my sleep until I was about 14 that is when I began having tonic-clonic (grand-mal) seizures and absence seizures (staring off, making faces or noises.) I also have Lupus which affects them, when you get sick it lowers your threshold... Anyways I had an awesome pregnancy, no seizures really, my hormones sent my epilepsy and lupus into remission and I had never felt so good in my life.... But once I had my daughter it all went down hill for me and I'm actually going to texas in a couple days to see if I am a candidate for surgery and if not then I am going to do VNS.. So I can be a better Mom to my daughter and I would like to drive too lol, and do things on my own with her, without my husband or mother needing to be there lol... I also want to have more children...

Many people can have epilepsy and never show a symptom/seizure their entire life, until one thing sets it off, in your case it may have been the hormones of being pregnant.. With women with epilepsy hormones can affect them in different ways, I did great during my pregnancy while my sister (also epileptic) had more seizures.. My daughter was born perfectly healthy, I was scared to death that she wouldn't be. I was on Lamictal which is the best for the baby, the only risk for the baby is less than 1% of a cleft palate and less than that if you take folic acid.... It is up for you and your doctor to decide if the benefits outweigh the risks...
Take care
M.

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L.P.

answers from Sacramento on

Hi P.,
I was diagnoised w/epilepsy during my second pregnancy. I had a grand mal while putting my 1 1/2 yr old son to bed, I was about 6 months pregnant at the time. I was on bed rest etc for the rest of the pregnancy, I had to have a C section so the doc's were very concerned at the time. They put me on HUGE doses of medication just after I gave birth. I was in a fog for his first two years of life & knew I was not bonding with him the way I had with my older son, so I stopped taking the medicine.
I did wean myself from it actually a lil at a time. But that may not be the best advice for everyone..it just was for me. Several years passed and I had not had any Gran mal seizures however I did have a couple of petit mal's. Again with the medicine/MRI/Cat scans etc....nothing found so on the medicine I went again. And again I weaned myself from it.
Now the GOOD news.....After nine years I found myself pregnant again!!
Of course right away the doc wanted to medicate me "just in case".....how stupid I thought,why risk the babies health so I found a another doctor who went along with me....Of course they monitored me real close etc but I had no problems...it was the best pregnancy I had ever had. So it is possible to have another just listen to your body.
If I had listened to the first ob he would have had me medicated right away and the effects to the baby would have been unknown I could not live with the chance that I was going to do my baby damage with the medicine. The first Ob did suggest I not go thru with it..that was not an option at the time for me.I should also say this was in 1995, and I do know the medicines have changed dramatically since I was last taking them.
Find the right doctor,someone who will listen to you and answer your questions.Hopefully an OB/GYN who will work with the neurologist... It can be done....
I ended up having a wonderful daughter,again C-section,and named her "Cherish".
Now i will tell you one more thing, I am self medicated now. You may not agree with me but it SAVED MY LIFE. I smoke something green that is/not/maybe against the law. I feel certainly very nervous telling you this but truthfully I don't know if I could have survived any more of the seizure medicine. I spent alot of time reserching it and I have not had a seizure in.....let me think.....my 2nd son is now 21 sooooo....gosh atleast 18yr's !!!! Let me know if you decide to go ahead with another baby I would love to hear...Hope this helped even a lil bit & GOOD LUCK!!!! Lisa

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