Seizures, Medication & Supplements

Seizure Medications

Bryer was diagnosed with seizures in February 2024 after an at-home EEG study through Seattle Children's. She has tonic seizures, which have gradually increased in length and severity over time, though they still typically don't exceed one minute. Right now, she averages 1–2 seizures per day.

Where We Started

Lamotrigine was Bryer's first seizure medication. Over time, we increased her dose to 125 mg twice daily, but unfortunately we haven't seen meaningful seizure improvement from it.

Adding a Second Medication

In September 2024, Onfi (clobazam) was added. At the higher Lamotrigine dose, Bryer began having sleep issues (trouble falling asleep and staying asleep), and we also hoped Onfi could help with seizure control. We slowly worked up to 5 mg in the morning and 5 mg at night.

More Testing and a Medication Trial

Because Bryer's seizures continued, we did a two-day EEG study in the Epilepsy Monitoring Unit at Seattle Children's in November 2024. After that, we briefly tried adding Vimpat (lacosamide). But after about two weeks, it was clear it wasn't the right fit for her—her seizures didn't decrease, and she was extremely lethargic and uncomfortable, often not getting off the couch and holding her head.

A New Step: VNS

In April 2025, Bryer had a VNS implanted (Vagus Nerve Stimulation)—a pacemaker-like device placed under the skin that sends gentle electrical pulses to the vagus nerve. VNS can help some people reduce seizure frequency and/or severity over time, and it can also be manually activated with a magnet at the start of a seizure.

One reason we felt good about pursuing VNS is that long-term follow-up studies of people treated with VNS have shown lower SUDEP (Sudden Unexpected Death in Epilepsy) rates over time. It's not a guarantee and it's hard to prove cause-and-effect, but it's a meaningful potential benefit we value—especially alongside any improvements in seizure recovery.

The surgery and recovery were incredibly smooth—she was in and out within a couple of hours, needed only Tylenol/Advil for a day or two, and had no complications.

So far, we haven't seen a major reduction in the number or length of her seizures, but we have noticed that she often recovers better, and when we use the magnet right at the onset, it can sometimes interrupt or lessen a seizure. Overall, we're grateful for VNS—both for the day-to-day improvements we do see and for the added reassurance around SUDEP risk.

Where We Are Now: Tapering Off Onfi

We are currently weaning Bryer off Onfi. Over time, we noticed a very gradual decline in motor skills and activity, along with weight gain and other changes. During a visit to the Rett Clinic in Colorado this past summer, we learned that some of what we were seeing could be side effects of Onfi for some kids. After doing additional research and hearing from other families in the Rett community, we felt it was a likely contributor for Bryer. Other parents described similar challenges—like increased drooling, losing skills such as walking, or struggling more with head control—and we had started noticing some of those same signs.

Because Onfi is a benzodiazepine, we're tapering very slowly and carefully. We're about one month in and have eliminated her morning dose.

Helpful Resource for Parents

This is an incredibly helpful talk by Dr. Robin Ryther, a Rett Syndrome and Epilepsy specialist. It walks through all the potential treatment options and gives thorough descriptions of each. I refer back to it often.