Transition to Adult Care

I will be updating with all the exciting antics Abigaile has been up to, but I wanted to share this.

This may be a longer post, but I wanted to share some reflections from Abigaile’s transition into adult neurological care. It’s been a journey filled with lessons, challenges, and growth, and I hope our experience can resonate with or help someone else navigating a similar path.

First, some background. My daughter has a GABRA1 mutation and wasn’t officially diagnosed until she was 14 years old. The neurologist who made the diagnosis was a compassionate and attentive professional, and I will always be grateful for the care she provided during a particularly chaotic time. Abigaile’s seizures were out of control then—she had 270 days with at least one tonic-clonic seizure (usually in cluster of 3) in the year prior. Seizure control became the priority, and the neurologist started her on the keto diet and appropriate medications. However, her dystonia wasn’t addressed at the time because seizures were the immediate concern.

Fast forward to August 2021, just two weeks before Abigaile’s 18th birthday. I received a call from the neurologist’s social worker, urging me to start the guardianship process, which I was already working on. She then mentioned that we would need to transition to an adult neurologist within six months. This hit me hard—we were still reeling from the pandemic’s effects, and my daughter needed stability, not another major change. When I voiced my concerns, I was told they would get back to me, but the neurologist agreed to see my Abigaile until she turned twenty-one.

Over the next two and a half years, the care we received felt stagnant. The neurologist continued writing prescriptions but didn’t address my daughter’s dystonia or suggest new strategies for her long-term care. Our final appointment was a stark reminder of the need to advocate differently in adult care. When I brought up dystonia again, she asked me what medications she was on.  Her suggestions were to:

1. Find a neurosurgeon (without a referral).
2. Request a baclofen pump. (A surgical implant requiring replacement every six months).
3. Understand that this would be our last appointment except for keto-related issues.

This was a wake-up call. As a parent, I’ve always been my daughter’s advocate, but the shift to adult care required a new level of persistence. In Florida, finding specialists for complex conditions like Dravet Syndrome is a challenge. After meeting with a few neurologists who didn’t seem like a long-term fit, I turned to the Dravet Syndrome Foundation (DSF) website for guidance. Based on several recommendations, I scheduled an appointment with a neurologist who focuses on adult care.

We just had our first appointment, and the difference was night and day. Here’s what’s already happened:

1. We’ve scheduled her first EEG since 2018.
2. We’ve received a referral and appointment with a movement specialist the neurologist works closely with.
3. They plan to monitor and adjust her medications in the EMU (Epilepsy Monitoring Unit) to optimize seizure control.
4. The neurologist is significantly younger than others we’ve met, meaning we can build a long-term, stable relationship for her care.

My Takeaways:

• Pediatric neurologists often transition patients by age 18. A long-term relationship isn’t guaranteed, and preparation for adult care is critical.
• Advocacy doesn’t stop as our children grow older. While none of us have extra time, starting this process earlier could have made the transition smoother.
• The right fit in a physician makes all the difference. If you’re not happy with your care team, don’t settle. Keep searching—it’s worth it.

To all the parents and caregivers out there: You’re not alone in navigating these challenges.

The Poppy