New parent with Epilepsy?

[izziiee]

So I'm not sure if I'm posting this in the right place or even what I'm doing here as I'm not a prime candidate to join this forum. I don't have Epilepsy. My best friend does. But I thought I would give it a try because responses seem to come quickly here and it seems like a helpful place.

Anyways. Like I said my best friend has Epilepsy and has been living with it for 23 years. She's become well accustomed to the ups and downs of the disorder and things were going pretty well until she found out she was pregnant. The beginning of the pregnancy was difficult with medication issues and everything, but now she's worrying herself to death about when the babies (twins!) get here and what would happen if she had a seizure (tonic clonic, complex partial and atonic) when she's alone with them.
Unfortunately she doesn't have auras so there's really no warning and with her hormones changing after she gives birth she's bound to have a couple unexpected seizures.

Well my question is to all parents who have Epilepsy. What extra precautions did you take when you had kids, especially newborns? I'm going to be helping her out the first couple weeks and it would be really helpful.

Thanks!

Isabelle

 

[Nakamova]

Hi Isabelle, I'm not a parent, so I'll leave it them to respond, but I wanted to welcome you to CWE, and I applaud you for being a good friend.

Best,
Nakamova

 

[Cordero]

Hi izziiee,
Thank God for good friends like you. I'm a parent of 2 children and I've had seizures for about 23 years too. My first pregnancy was so scary. I remember calling my dad telling him that I was pregnant with tears of joy and tears of fear. I was referred to a specialist in nuerology and an at risk pregnancy doctor. Both of them emphasized the importance of taking folic acid for the growth and development of the baby. The specialist advised that I take a little extra folic acid with the prenatal vitamins.

I was taking Keppra during my first pregnancy and by the end of pregnancy I was having 14-21 seizures per month. The Keppra also went up to 3000mg twice a day but he delivery turned out normal. After my first born was born we didn't know what to expect so we moved in with my parents. We were fortunate to have a lot of family support.

My seizures are the temporal lobe seizures and they aren't like the severe grand-mal seizures. I also have auras that let me know when they are going to come. I still was having seizures after having my baby but my family would take over when I wasn't feeling good. Eventually my specialist prescribed a second medication called Lamictal. Finally, the seizures got controlled. I ended up getting pregnant again. This time I had seizure control but I was taking 2000mg of Keppra twice a day and 100mg of Lamictal twice a day. My daughter is so advanced for her age. She's 3 and a half and can do the same homework my kindergartener can do.

I can't drive but on good days I can walk my kids to school. I always have a cell phone on me incase of emergency. My family and especially my mother-in-law take care of us when I'm not feeling good. I thank God so much that I can sense how I'm going to feel during the day. If I'm not sure about whether or not I can walk my son to school I'll call a family member to see if they can take him to school. It is really hard to ask family and friends for so much help but at any opportunity I get I try to be a blessing in return. It's been 5 years of parenting and so far with the grace and mercy of God and loving family members everything has worked out so far. I hope that what I wrote helps give you ideas on what precautions to take. I'll keep you guys in my prayers. Best wishes

 

[Meetz1064]

I'll be

honest.

I've had 3 kids, and I've had t/c's my entire life. Mine have been well-controlled though, and my other 3 types of seizures didn't kick in until after having my kids.

I was married, although my partner wasn't much help, and I had no family around. I relied on neighbors, and a couple of good friends that I had made. I made it a point to play with my kids. Down on the floor, on blankets, using playpens. While I also have absolutely no warning, like your friend, I was absolutely VIGILANT about taking my meds at every scheduled time, on the dot, and eating well. That I did to keep the blood levels balanced, to help limit the likelihood of blood levels swinging back and forth......

My monthly cycle never had any rhyme nor reason to it, so I couldn't blame my seizures on that. I went through different meds as well, trying to get a grip on the seizures, but mine went from being a daytime issue during the earlier part of my life to a nocturnal issue.

The other thing that helped was being put on folic acid while I was pregnant. I don't quite understand how it balanced out the lack of seizures for me during the pregnancy, but it did. Afterwards, the doctors decided to keep me on multivitamins, with folic acid added to help. And it did. *scratching head*

Hope that helps a little bit.........