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JME and pregnancy
Fri, 04/09/2004 - 12:33Topic: Family & Friends
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
Submitted by mommy2kyra on Mon, 2004-04-05 - 22:45
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
Submitted by tibet2 on Tue, 2004-04-06 - 12:19
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
Submitted by tibet2 on Mon, 2004-04-05 - 19:43
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!