This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!
I want to share a story about my experience with pregnancy and epilepsy. I have three children, ages 12, 4, and 2. I call this stage “toddlers and teenagers”… maybe one day I will write a book!
Seizure during pregnancy
I’ve had Epilepsy my entire life. However, I went 17 years seizure free, so doctors thought I outgrew it. Needless to say, when I was 21 and pregnant, I didn’t share that information with anyone. I had a breakthrough seizure when I was 3 months pregnant, and life as I knew it changed. I lost my job, I gained more weight than I should have because of the medicine, I couldn’t drive…. it was mentally an awful time in my life. However, I took my medicine like a good girl, was able to hitch rides my senior year of college and graduate with a Bachelor’s degree a few months later… and later maintained seizure “freedom” for 5 years.
Life in progress
In 2011, I started a blog that was about my running evolution, life as a single mom, and my journey with epilepsy when it reared its ugly head again with cluster seizures. At the time I was off medicine again, since it had been a substantial amount of time in between seizures. My neurologist prescribed medication again and I was to not give myself permission to take myself off it unless I had a doctor’s approval.
Fast forward to 2014, another seizure when pregnant with my second child. I had previously argued with my doctor about not needing to proactively take a Class D medicine that could potentially harm my unborn child.
I thought I had it all under control.
Time for us to speak up
At the time I was going through a nasty situation where my seizure disorder was being used against me. Seizures are still so taboo and people are uneducated about epilepsy.
It’s not the fault of people not affected – as a community, we just don’t talk about it. Or when we do… it is a never-ending re-posting of the same statistics, same ‘celebrities’ that have this disorder as well, or the same negativity that surrounds our life’s from having restrictions (Not driving, medicine side effects, feeling isolated). Thankfully I had a strong education and knew how to advocate for myself, and an amazing support team, so everything unfolded the way it was supposed to.
The right doctor makes all the difference
In 2015, I was pregnant with my third child and decided to continue my medicine but find the RIGHT doctor who would walk with me through this pregnancy journey. I sure did, and still see him every year. This pregnancy was seizure free, and I have been seizure free for over 5 years. My doctor scheduled monthly lab-work, monthly EEGs, and took excellent care of me while collaborating with my OBGYN to give me the best care.
I was honestly worried about having a seizure during that pregnancy, since it happened with my other two… but it goes to show that if you have the right medical care, amazing things can happen. You cannot control everything, but having superheroes in your corner will encourage you that you CAN have children with Epilepsy.
Becoming mom with epilepsy
If you want to have children, I encourage you do find the right doctor. Listen to them. Take their advice seriously and know that they have your best interest in mind. Seizures suck, but your medical care doesn’t have too.
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