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Caring for a newborn when you have epilepsy
Tue, 10/24/2006 - 10:22Topic: Women With Epilepsy
Good morning, all.
My name is Laura. I'm 40 y.o., and I have had epilepsy since I was about 4. I am currently on 2 medications (Keppra and Lamictal), but my seizures are still not completely under control; in the 36 yars I've had epilepsy, they never have been, actually.
Usually I have either simple seizures or auras, where I just feel a weird fluttering sensation in my tummy, but no blanking out, or the complex partial seizures, where I blank out for a bit of time (the length of which varies), and then end up in a fugue state, confused, scared, and disoriented, again for varying lengths of time (I'm having about 8 of these complex ones a month right now). Occasionally I have the larger tonic-clonic/grand mal seizures with convulsions, etc that knock you into the E.R., but I consider these to be more of an anomaly (I've had about 5 or 6 of these in the past 2 years or so).
The big excitement in my life right now is that I'm 6 months pregnant, with a baby boy due in late January. This was a planned pregnancy that has so far been blissfully easy. I hesitate to boast to loudly as I just crossed over into my 3rd trimester, but so far, no nausea, minimum aches and pains, I got pregnant the second I tried, and though it's getting harder to move very fast, I still feel like I'm physically in great shape. My husband and I are thrilled.
Perhaps best of all is that the number and severity of my seizures has only decreased since I got pregnant. I still have them, but as complex seizures go, they've been milder by my standards, and I'm probably having about half the number I had before I got pregnant.
I am really interested in hooking up with other parents with epilepsy, to get some tips on steps they are taking to safely care for their newborns/children in the face of dealing with the knowledge that they might have a seizure. And also tips on measures they take to ensure their children's safety during the actual moments when a seizure occurs.
I live near Boston, and it's much harder than I thought it would be to find a support group along these lines. I've had no luck so far, so I thought an ongoing electronic discussion group of sorts would be the next best thing. If there are others of you out there that would be interested in having some kind of dialogue around this - ideally somewhat ongoing, if possible - then please write back.
Thanks in advance.
Kind regards,
Laura
Comments
Re: Re: Caring for a newborn when you have epilepsy
Submitted by Curlcascade on Tue, 2006-10-31 - 16:53
Dear Lisa,
THanks very much for your response; it was very helpful. My
Kindly,
Laura
Re: Caring for a newborn when you have epilepsy
Submitted by crashandburn on Wed, 2006-10-25 - 09:28
I have 3 kids and I hate to say for the first I didn't even know I was having seizures. My SMIL was furious at me because she thought I was neglectful and just sleeping for no reason. After my gran mal with my second we knew what was going on.
Like you being pregnant actually made my seizures better. I don't remember the infant months so much, but I intinctively knew to nap while they were sleeping. Since I had 3 kids in three years, I remember sleeping out on the couch with them nearby. I think "Mommy" instinct kicked in and even while sleeping after a seizure my "scanner" knew where they were. I knew I couldn't sleep for hours, but enough to recover.
I never dropped a baby or hurt one while having a seizure. I remember just laying them down, going to the bathroom and coming back. Again, because I knew I had children, my brain seemed to work better after a seizure. Not great, but enough to get through it.
I taught my kids that I had seizures and that I needed to sleep. They could watch TV, play, color, whatever, but the rule was they couldn't leave the room. I also taught them that Mommy is okay as well and not to get scared and only call 911 if I fall down and shake. Thankfully, I've only had that one gran mal. They also know when I am out in public and have a seizure to tell someone, but not to call 911 unless I gran mal, and watch me/follow me (they like babysitting mom).
I average about 3-5 complex partial seizures a month. Usually I am home and since my kids are older now, it's not so terrifying. I still sleep out on the couch and let my kids sit on top of me while watching tv. They have to ask for everything, food, go outside, so on some level I know where they are.
I've been very fortunate that my kids have handled this plan well. Mine never got into things while I was napping, took off or hurt themselves.
Have a plan for your family for your seizures. If you have understanding neighbors/family that can watch your child for an hour or two until you are back to normal, even better. If there are days that I have multiple seizures, I call a friend and ask if she can take them so I can sleep. Usually one seizure doesn't totally wipe me out, but I still need a around an hour to be functional.
Re: Caring for a newborn when you have epilepsy
Submitted by angel_lts on Wed, 2006-10-25 - 08:17
Hi Laura, Well it can be very hard while pregnant and having children. Make sure you are taking folic acid during this time. But talk with your doctor before making any changes. I have four children. It was tough I am not going to say not. I had complex partial seizures. I would lay down in the afternoon everyday. And when I worked during the first child, I had to be in bed by 7 or 8 at night when I had to wake up at 6 or 6:30. But when I had the second, third and fourth child, I was home. I would go to bed early and take an afternoon nap or just rest. When my children were getting old enough not to have a nap, they would have to go in anyway and just play in there room while I was pregnant, and resting. I had auras and would drop anything that was in my right hand. So I used to carry my children only in my left arm. Never had a problem. Slide the baby down my leg while walking down the steps during an aura, but never dropped him. That was the closest I got to drop a baby, but never did. My kids, where taught to know what to do when mommy was sick. If they were not able to call my husband, we set it up by phone to push one button to contact my husband and that worked great. Teach your children about epilepsy. Rest, vitamins is the most important thing to do. http://www.epilepsy.com/medications/b_keppra_pregnancy.html http://www.epilepsy.com/medications/b_lamictal_pregnancy.html take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/