According to the Epilepsy Foundation, about 1.1 million women of childbearing age in the United States have epilepsy, which can put them at risk for complications during pregnancy. To ensure these women have a safe journey to motherhood, UF Health Jacksonville has created the Pregnancy in Epilepsy Program, known as PEP. The program uses a multidisciplinary approach to help address the unique challenges caused by epilepsy. The care team includes physicians, social workers, pharmacists and epilepsy coordinators who offer individualized care to the expectant mothers every month, answer questions and provide additional needed resources.
Dr. Suparna Krishnaiengar who serve as a neurologists and epileptologist in the program, championed the development of PEP and coordinated with other specialists to make it a reality. Dr. Katherine Zarroli who serves as a neurologist and epileptologist also actively participates in the program. Here they discuss all that PEP has to offer for women on the First Coast.
How did the PEP program start?
Krishnaiengar: I wanted to counsel patients regarding their seizure medication, side effects, and safety. However, the time during clinic was not sufficient to inform them of everything I wanted. I felt the best option would be to build a multidisciplinary program and create a one-stop shop approach where we have several specialists such as a pharmacist, a social worker, and an epilepsy coordinator, in addition to a physician. This way, patients could have their needs addressed.
I started to coordinate with the different specialists, and they joined us in our efforts. We as physicians may not be able to answer some questions, but having other specialists helps meet the patient’s needs. The first official clinic was in January 2022.
Why is the PEP Program important?
Krishnaiengar: Education and counseling are important reasons I designed this clinic. Information is power. We provide them with the information and resources they need to get through the challenges of their pregnancy.
The thought process was that when pregnant women with epilepsy understand the disease process, they will be compliant in taking their medication and have a better pregnancy experience and a healthier baby.
Zarroli: The goal is to monitor their seizure control and medication levels and then make sure we answer any questions or concerns they have and ensure they understand the importance of taking their medication and coming to all the visits.
What are some main concerns or fears of women in the program?
Krishnaiengar: One of the challenges they face is changes in estrogen and progesterone hormone levels which can change their seizure frequency. Sometimes there is also the fear of anti-seizure medication and how it will affect the baby during pregnancy. Some women want to stop taking their medication because they fear it will harm the baby but doing so may worsen their seizures.
Women also have questions about their health insurance coverage. Our social worker is extremely valuable in connecting them to qualified resources.
What services are offered by the PEP Program?
Krishnaiengar: We have a monthly clinic where all the patients are scheduled on the same day but at different times. The time is divided so that when the physician sees one patient, another patient sees the pharmacist. After that, it rotates until all the patients have seen the physician and the specialists. They can see all these specialists in one visit versus having multiple visits. Telehealth visits are also available for women to attend from the comfort of their homes.
How does the anti-seizure medicine affect the mother during her pregnancy?
Krishnaiengar: It is important they take their medication to avoid seizures. We try to reassure them that taking the medication is in their best interest and that if they consistently take their medication, most times the pregnancy will be normal.
Zarroli: The North American AED pregnancy registry is a helpful resource. It lists all the clinical trials for various seizure medications. That’s where information on the relative safety of all the different seizure medications is collected. This tool provides information on the many different drugs and the risk associated with certain medications. Some medications are safer than others. It is a personal discussion with the patient about the medication they are on and their seizure control. From that, we can develop a joint plan about how to go forward during their pregnancy. We have the evidence from the trial to help guide the discussion.
Can women with epilepsy breastfeed?
Krishnaiengar: Yes. We encourage them to breastfeed because the benefits of breastfeeding outweigh the risks of the anti-seizure medication. The anti-seizure medicine that is secreted in the breast milk is typically less than what the baby is already exposed to during pregnancy.
What should an expecting mom do if she experiences a seizure?
Zarroli: It depends on the duration of the seizure, first and foremost. If it is the person’s typical seizure and it’s brief, then we recommend they call the office, and we consider adjusting their medications. The medications sometimes need to be increased or decreased gradually during the pregnancy. It depends on the woman, her body changes, and various other factors.
If the patient has a seizure that is different than or longer than their typical seizure, then we refer them to the emergency room and evaluate them.
What’s the most important thing people should know about the program?
Zarroli: Access to available resources. The frequency of the clinics, the multidisciplinary approach, and the opportunity for the expectant mothers to get their questions answered. This method makes things feel more personalized in care. I believe that provides strong value to the program. Also, it is essential to get pregnant women with epilepsy into the program as soon as possible and not to delay their care.
Krishnaiengar: There are resources available, and because of the unique challenges these women face, it’s important they can attend the clinics, have access to the information and counseling, and have a much better pregnancy outcome. The PEP is the first of its kind in Jacksonville, Fl.
For more information on the Pregnancy in Epilepsy Program visit: Epilepsy | Neurology | UF Health Jacksonville | University of Florida Health (ufhealthjax.org).