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JME and pregnancy

I am a 25 year old woman with JME. Can any mothers can tell me about the types of medications they have taken while pregnant? Any discussion I have with my husband about having children is complicated with speculation about whether I would be able to adapt to the difficult lifestyle of first-time parents. My main concern about having children is that I can't figure how I would deal with the sleep-deprivation that occurs during the first year (and past that) of babyhood. My husband is very sensitive and will probably do more than his fair share of getting up at night but I know that after two days of having interrupted sleep I would have a seizure. I don't plan on having children for another 5 or 6 years but these are concerns that I think of often because I don't know any epileptic women who have dealt with these problems themselves. What's been your experience as a new sleep deprived mother? I have adapted my life to being an epileptic but I can't imagine how I would be able to do the same faced with the challenges of early motherhood. My neurologist has explained to me that I would be taken off Depakote and put on another drug that is safe to take during pregnancy but didn't go into details about what that drug would be or how it would differ from Depakote (which I have had good success with). I have a mild form of JME and have only had one grand mal seizure, Depakote and a strict sleeping schedule seems to keep the seizures away.Do any mothers have any information about epilepsy medication and breastfeeding? Are there medications that are safe to take while breastfeeding and has anyone had any personal experiences with these medications while breastfeeding?Thank you for your help!

Comments

RE: JME and pregnancy

hi, jme is a tough epilepsy in terms of the inevitable sleep deprivation that comes with parenthood. i have tle - and while sleep deprivation is not good for me - it doesn't have the same sorts of risks that it does for someone with jme. you will have nights when you are woken up several times. given the nature of jme - that will be a problem. but i don't think it is insurmountable. it depends on how much your husband can do, how lightly you sleep, how much help you get, how the new med works, how fussy the baby is, how creative you are about finding ways to work around the problem...... i don't know what med your doc will change you to for pregnancy. i had 3 children while taking a "bad" old med and i nursed them and had no problems. i'm their mom - so i think "the children are all above average" as garrison keillor says. there are things that parents with epilepsy can do to keep the baby safe when their seizures are not totally controlled.... changing the baby on the floor (which isn't a bad idea for everyone!), sitting on the floor while feeding the baby, using an umbrella stroller inside the house.... things along those lines. good luck. you sound like you will be a great mom! you are already thinking about the baby!

RE: JME and pregnancy

Hi there,I have complex partial seizures (I assume JME stands for Jacksonian epilepsy?? Sorry, I'm not very good at acronyms), and am a mother. I took phenobarbital throughout my pregnancy with my first baby (and, currently, my second as well :) and I nursed my daughter for 8 months. I have been told by my neuro that phenobarb is the safest med to be on for both pregnancy and nursing. I hope to nurse this baby, but my phenobarb dosage has increased to twice the amount I was on with dd. We will have to wait and see if I'm able to nurse.The sleep deprivation is tough...I won't lie. Despite my seizures being very well-controlled with dd, I had 3 seizures in the hospital the day after I gave birth. I also had a few seizures here and there in the first 6 months. Thankfully, those seizures were nocturnal, and hubby was there to help. Even now (dd is almost 2 years), if I'm sleep-deprived for more than a day, I'm almost guaranteed a seizure. That's tough to prevent as a parent. Kids get sick sometimes. You get sick sometimes. I'm sure you get the point. I recommend that you get as much help as you can in those first few months, and from there try to continue with a regular break for yourself (maybe once a week an hour or two, spent on just YOU)...that really ought to help ward off a lot of stress and exhaustion that naturally comes with being a parent. Don't get me wrong: I'm not saying that being a parent is too tough. What I am saying is that you're going to need help from time to time. Don't worry...while parenting can be exhausting and stressful, it can also be so elating and peaceful...it's worth every minute :-) Good luck to you and your hubby!Heather

RE: JME and pregnancy

hi heather,"jme" is juvenile myoclonic epilepsy..... the name is a little deceptive because it can be adult onset and it is not outgrown. it tends to respond very well to drug therapy. it is characterized by myoclonic seizures that tend to occur after waking up in the morning or following sleep deprivation.... so that's the special challenge with jme and young parenthood. (jacksonian was a really good guess and shows you've been doing lots of reading)http://www.emedicine.com/NEURO/topic416.htmlike you, i don't think jme is an impossible barrier, not by any stretch of the imagination. i wish aubertjmd as much joy as both off us have had in parenting. you have great advice about parenting and accepting those offers of help.

RE: JME and pregnancy

Hi tibet,Thanks for the correction, I appreciate the explanation :)Heather

RE: RE: JME and pregnancy

No, JME is not a acronym for Jacksonain Epilepsy.  It stands for Juvenile Myoclonic Epilepsy.It produces Grand Mals, Myoclonics, and Absences.I have JME, and TLE.JME is genetic in my family, and one of my kids has Grand Mals and takes Dilantin for them.  The other child is non-epileptic so far.  My 3rd child is from my husband's proior marriage adn she is 13, Allison.  My oldest is, Gretchen is 10 and has had epilepsy for 3 years, and my other child, Brittani is 8.Nancy  I was removed from Depakote and put on Dilantin.  

RE: JME and pregnancy

Hi there.From a read of the link to EFA,and these other links,I hope that you find something else useful to you in your wish to start a family and,if nothing else you can read them with your husband and talk it over with him some more.Sounds like you have a great and understanding husband who understands and wants to help as much as he can.You could always share the sleep cycle of your new arrival between you,that way you both get sleep,and the baby will be fine,you as well will be less stressed about safety and hopefully not as tired as well.It would seem your neuro knows his stuff regarding the switch of med for you whilst you are considering starting your family and during your pregnancy.At least according to the reading I've done.Lamictal seems to be the choice of drug,in the switch from Dapakote that you are taking now, and a healthy diet and vitamins also seem to be highly on the list of 'Does',as well whilst pregnant. I hope that you go Ok on whatever drug your neuro advises for you,that all goes well and you do achieve your wish.http://www.emedicine.com/NEURO/topic416.htmhttp://www.ncbi.nlm.nih.gov/e... can be nothing better than starting and having a family,and you seem to both want that and are considering all your options regarding safety in doing so.

RE: JME and pregnancy

Thank you to everyone that has posted such helpful messages! I particularly appreciate Tibet2's suggestions about doing things like changing a baby on the floor, etc. These are things that I never would have thought of but they make sense and make me realize that other epileptics have been able to adapt to early motherhood through creative ways and I can do the same! My husband and I have talked about sharing work involving getting up in the middle night but I was concerned that he would be doing most of the work and he would be completely overwhelmed with sleep deprivation but I think we will be able to work out some sort of system where he gets rest, too. Thank you for letting me know about Lamictal, I will look into that. I look forward to my next meeting with my neurologist where I can discuss all this new information with her! Thank you again!

RE: JME and pregnancy

aubertjmd.No thanks are needed-that's why we are all here,to do that,just try and help and offer suggestions as and when we can.Your husband sounds a caring considerate man who is willing to help you and try and ease the worry on you.If he is-as he seems to be to want to help then I'm sure you can work out a system that will work and enable you both to get rest and you to avoid being sleep deprived.I'm glad the links were of help,especially in regard to Lamictal, and that you are confident in talking things over with your neuro on your next visit.Writing a list of your points to ask might be a good idea,and that way you will not be kicking yourself if you forget anything when you leave about what you wanted to discuss at that time.

RE: JME and pregnancy

The first time I had epilipsy was when I was pregnant with my first child at the age of 22. This was very unexpected and very frighting. It was put down to severe eclampsia at the time. I have had two children since then the last two having a seven year gap. I was put on Epilim at a reduced amount for the first couple of months of the pregnany and then increased later on. Night feedings are tiresome and I did breast feed, which at times was more draining than I realised. My husband would get up in the evenings to help and lucklily my babies took these with ease. My best advice is to sleep during the day when your baby sleeps. It was my life safer, also people are more willing to help you during the day than at night. NEVER feel guilty for sleeping during the day (alot of mothers do). I also used the floor for most things, even a matteress on the floor of one of my spare rooms for day sleep times and night time feeds helps to relieve the stress. Hope this helps and good luck.

RE: JME and pregnancy

Hi Kiwikon.I think you give good advice regarding sleeping when the baby does. I read that breast-feeding is considered valuable for all women and their babies, including most women taking AEDs.And that the baby will have become used to the drugs while in the womb, and there is only a small amount of the drug in breast milk,so that's reassuring to know at least.I am sorry that your breast feeding experience was as painful as you say,and that you had a torrid time of it,but you sound good and willing to share to help others.Is it right what I read that some drugs, for example phenobarbitone, can make the baby over-sleepy, so it might possibly be a a good idea to alternate bottle-feeds and breast-feeds? I do know that the information leaflets, which come with prescriptions of an AED, often include information about breast-feeding for that particular drug,and I'm sure that each individual neuro has their own advice in particular regarding changeover of drugs/titration rates,though some go faster than others in changeover or not as the case maybe,as each individual person responds differently to both drug exposure and rate of titration in changeover.I imagine that for you at the time talking and talking again all this through with your neuro and your husband may have helped regarding your own experience which,as you say in feeding the baby at night can be tiring ,and certainly it is helpful if a partner can take over some feeding duties. http://www.seizures.net/http://www.epilepsy.org.uk/info/pregnancy1.html

RE: JME and pregnancy

I also have JME and am currently pregnant.  I was on depakote for my first pregnancy but had a miscarriage.  My doctor had tried alternative meds because Depakote is not a safe drug for pregnant women due to the high incidence of neural tube defects.  I tried others but they didnt work as well as Depakote.  For this pregnancy I have been on Keppra, which is a newer and safer drug.  So far my pregnancy has been great and I am 25 weeks along.  When you have epilepsy you qualify for much more detailed sonograms/ultrasounds to rule out any congenital abnormalities which is very assuring.  I am still trying to find out if Keppra is safe for breastfeeding.  If not there is nothing to be ashamed of for using formula.As for sleep deprivation my husband has been told by my doctors that he has to do ALL THE NIGHT FEEDINGS!!!  When it comes from the doctor, they have to agree, and my husband is NOT comfortable with babies but he has simply agreed to do it, problem solved.  I hope this information has helped you a little. 

RE: JME and pregnancy

Oh, how I remember the fears of being a mom with epilepsy. A lot of the suggestions given here are great! I was on phenobarb and dilantin with all 3 of my pregnancies and have 3 beautiful, healthy children. The sleep deprivation was a concern of mine too, back then. I noticed that someone suggested sleeping when the baby sleeps. I would have to agree with that. My husband and I worked out a schedule for those night feedings. I would get up at night during the week (sleep during the day while baby was napping) and he would get up on the weekends (so I could have 2 full nights sleep). It worked for us wonderfully.Also, as far as breastfeeding? I didn't breastfeed any of my children, because I didn't want the meds that I was taking to go into their little bodies. It just seemed safer not to.Hope this helps.Ladybug

RE: JME and pregnancy

I have just read in EpilepsyUSA that Lamotrigine poses low risk of Major Birth defects. Now for breatsfeeding I dont know.I have heard that people are breastfeeding more even if they are on meds. Myself I wanted to breastfeed so bad, but did not for I was afraid I was feeding the baby to many of my meds. But that was about 15 years ago.I guess it depends on the medication you will be on.Make sure you take folic acid very important.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

I became pregnant at age 39

I became pregnant at age 39 and I have a healthy baby girl. I took depakene, phenobarbital, and Keppra. I was not able to breast feed. And for the sleep deprivation. I dealt fine with that. And it wad OK because I did not work for the first seven months of her life. So I slept when she did. I have been seizure free since I gave birth three years ago.

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