Alison and husband Preston have talked about planning a family but they knew her epilepsy would mean taking some extra steps. Here she shares their journey.
Epilepsy and Planning a Family
For a few years, my husband Preston and I have talked about the possibility of adding a child to our family. Our family is currently made up of our dog, Puck, and two cats, but we knew my epilepsy wouldn’t make it easy and it would take some extra steps. Before we got married in the summer of 2020, we started conversations with my epileptologist about what those extra steps would look like and how long they would take.
Step 1: Stop Birth Control (after you talk to the doctor)
The first step, obviously, was stopping my use of birth control, which I realized I had always been on since I was diagnosed with epilepsy back in 2006. Once I had my IUD removed, my seizures completely changed – my focal impaired awareness seizures always took place during the day but now are only nocturnal.
Step 2: Track Seizures
Preston and I have been tracking them even more closely and working with my epileptologist and fertility doctor since hormones can impact seizure frequency. We’ve noticed a connection between my seizures and different parts of my cycle, which we never noticed before since I was on birth control.
Step 3: Change Medication if Necessary (talk to doctor)
Since I was on a new medicine, and not all medicines are well studied for pregnancy, the next step was to transition off one medicine and replace it with a well-studied medicine. This process can take a while, so I encourage you to talk to your doctor early if you’re planning a pregnancy.
For me, the process took just over a year to transition to the new medicine and off the medicine I had been taking that wasn’t recommended for pregnancy. If you’re interested in learning more about epilepsy medicines and pregnancy, you should talk with your doctor and visit the AED Pregnancy Registry.
Step 4: Learn as much as possible
As we continue our family planning journey, we continue to work closely with both my epileptologist and fertility doctor to identify any next steps I need to take that are related to my epilepsy. Having to take the next steps can get frustrating at times, but it’s important, as it keeps me healthy and if I can get pregnant, it will make for a healthy pregnancy.
And don’t forget to reach out to others who have been through it.
Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA.