When Amanda Smith, 33, saw her positive pregnancy test in April 2023, she knew to call Page Pennell, MD.
Amanda has a history of epilepsy. The previous year, after a pregnancy that ended in miscarriage at eight weeks, Amanda had her blood levels checked. That's when she met Dr. Pennell, a UPMC neurologist and chair of the UPMC Department of Neurology.
Dr. Pennell specializes in epileptology – the diagnosis and treatment of epilepsy. Amanda has been able to maintain control of her grand mal seizures with antiseizure medications since she was first diagnosed with epilepsy at age 18. But pregnancy offered new challenges.
Dr. Pennell told Amanda to call as soon as she had her next positive test.
“As soon as I found out I was pregnant this time, I called Dr. Pennell’s office and got an immediate levels check,” says Amanda. “They were a little low, so Dr. Pennell increased the dosage of my antiseizure medication.”
Important Blood Test Results
Pregnant people with epilepsy should know their antiseizure medication (ASM) blood levels because pregnancy and hormones change the way the body metabolizes and excretes medication.
The rate at which a medication moves through the body is known as clearance. Clearance in pregnancy can increase up to four-fold of the pre-pregnancy rate, depending on the medication. In other words, some women will need to take four times their baseline dose by the end of pregnancy to maintain their ASM blood levels in the therapeutic range and seizure control.
For people with epilepsy, achieving and maintaining control of seizures is key to living a healthy life. That’s even more important for people with epilepsy who also are pregnant. Those with epilepsy are no more likely to have a seizure during the nine months of pregnancy or labor than in the nine months prior to pregnancy – provided they have active management of their ASM doses to maintain their blood levels (called therapeutic drug monitoring).
Some ASMs are not safe to take during pregnancy. That's why people with epilepsy who are trying to conceive should talk to their doctor before getting pregnant. Switching medications during pregnancy can also be complex.
Safer Antiseizure Medication
Each time Amanda saw Dr. Pennell and Erica Kemp, PA-C, in the UPMC Epilepsy-Obstetrics Clinic, she was given paperwork to give to her ob-gyn for her medical chart, where her care team noted medication and other changes.
The visits and reassurance from Dr. Pennell went a long way toward making Amanda feel confident that she could make it through pregnancy and labor without having a seizure.
Many pregnant people with epilepsy are referred by their neurologists to maternal fetal medicine (MFM) specialists, specially trained ob-gyns who care for high-risk pregnancies.
Amanda’s seizures were so well-controlled that her regular ob-gyn was able to manage her pregnancy without the assistance of an MFM.
Participating in a Research Study
Throughout her pregnancy, Amanda also participated in an observational study of epilepsy in pregnancy conducted by Dr. Pennell. The extra monitoring for the study made Amanda feel even more comfortable.
"During the first trimester, my blood levels were monitored through finger pricks,” says Amanda. “During the second trimester, they leveled out. But then, during the third trimester, I was monitored monthly.”
Dr. Pennell’s recommendations were particularly important when Amanda went into labor and found herself still laboring after 36 hours.
Recommendations for Labor
Amanda had prepared herself for the possibility of a C-section. But her seizures were well controlled with a personalized care plan, and she was able to have a typical vaginal delivery without complications.
“My main [seizure] trigger is lack of sleep, so Dr. Pennell had written instructions that really emphasized the importance of sleep,” she says. “When my labor wasn’t progressing, my care team let me sleep because the sleep was important to keeping me seizure-free through the delivery.”
On Dec. 20, 2023, Amanda gave birth to an 8-pound, 6-ounce baby boy named Remey.
When she delivered, Amanda’s antiseizure medication had been increased from her regular maintenance dose of 250 mg to 850 mg per day. It was important to increase the dosage during pregnancy due to higher medication clearance. After she delivered her baby, it was equally important to reduce the dosage to avoid overmedication.
“Dr. Pennell gave me a plan for tapering back on the medication three days after delivery, but I was getting dizzy spells,” Amanda remembers. “I was breastfeeding and afraid of going down quickly with the baby.”
Amanda adds that Dr. Pennell’s advice for life with a baby at her six-week checkup was also instrumental in keeping her seizure-free.
“Again, my main trigger has always been lack of sleep,” she says. “Dr. Pennell encouraged me to make a plan for help so I could always get at least a four-hour block of sleep and two or three two-hour naps a day.
“And when I first came home, my husband and mom took shifts caring for the baby during the night so I could get a good sleep,” she says. A wearable breast pump also allowed her to sleep while pumping for bottle feeds.
When Amanda returned to work as an elementary school math enrichment teacher in spring 2024, Dr. Pennell again helped guide her workplace in accommodating her need for sleep.
“My school family has been very supportive,” she says.
As she tapered back her medications over time, Amanda was asked for her input, which Dr. Pennell considered.
“I felt better going a little slower – two to three weeks at a lower level before going down again – and she followed my lead in supporting me,” she says.
Amanda says she will follow Dr. Pennell’s advice and won’t have another baby for a while.
“She highly recommends using birth control and not getting pregnant for at least a year to allow all my levels to return to normal.”
And she feels Dr. Pennell offered a lot of reassurance for her to have a successful pregnancy despite her epilepsy.
“I had no idea about medications needing to go up with pregnancy or back down afterward,” Amanda says. “There just isn’t that much information out there on this subject. The epilepsy and pregnancy clinic creates more resources for women, which really helps.”
Dr. Pennell founded the Epilepsy and Pregnancy Medical Consortium to improve access to this subspecialized care for all women with epilepsy during the reproductive years, regardless of their location. She and her colleagues developed information and tools for women with epilepsy and their health care providers through the online site, epilepsypregnancy.com/.
