First 50 Entries

This post summarizes early, descriptive observations from the first 50 pregnancy-related entries submitted to the EpiLinked platform. The purpose of this summary is to present initial patterns observed in self-reported data from a small, non-representative cohort.

Observations: Medication Blood Level Monitoring & Extended-Release Medications

Several entries included information about regular monitoring of antiepileptic drug blood levels during pregnancy. Dosage adjustments were frequently reported, often in the context of physiological changes such as weight gain. A small number of participants also described the use of antiemetic suppositories during periods of significant nausea, reported alongside efforts to maintain consistent medication intake.

Some entries mentioned the use of extended-release (ER) formulations of antiepileptic medications. These reports appeared more frequently in certain regions and may reflect differences in local prescribing practices. These observations are noted descriptively and will be monitored as the dataset grows.

Medication Patterns

Among the first 50 entries, the following medication-related patterns were observed based on self-reported data:

•  Lamotrigine and Levetiracetam were the most frequently reported medications, each appearing in approximately 30% of entries.
•  Approximately 40% of entries reported the concurrent use of more than one medication.

Pregnancy Outcomes

Based on aggregated self-reported outcomes:

•  Approximately 85% of entries reported healthy births without reported complications.
•  Among entries reporting monotherapy (use of a single medication), the proportion of healthy births was numerically higher, at approximately 90%, within this small sample.
•  Reported complications were most often described as mild and temporary.

Note: These findings are descriptive and based on self-reported data from a limited, self-selected group. They do not constitute medical advice or evidence of treatment effectiveness, and individual experiences may vary.

Community Engagement

The level of detail provided in many entries suggests a high degree of participant engagement:

•  Nearly 70% of entries included detailed narrative comments describing the pregnancy experience.
•  Several entries referenced regular consultations and ongoing monitoring with neurologists during pregnancy.

What's Next?

As the dataset continues to grow, planned next steps include:

•  Developing additional analytical tools to support structured exploration of shared experiences.
•  Expanding participation to include a broader and more diverse group of contributors.
•  Increasing awareness of the platform through educational and outreach initiatives.
•  Collecting more detailed and longitudinal data to enable more robust descriptive analyses.
•  Exploring collaborations with medical institutions, epilepsy organizations, and patient advocacy groups.

We are grateful to all participants who have contributed their experiences. Each entry adds to a growing body of patient-generated data intended to support shared learning and future research-oriented exploration.

Individuals who have not yet shared their experience and wish to contribute are invited to do so. Additional entries improve the breadth and descriptive value of the dataset.

— The EpiLinked Team