Starting seizure medicine has us grappling with anxiety and doubt

Two months ago, we took a step I’d been apprehensive of since Jude, my now 2.5-year-old son, was diagnosed with Angelman syndrome at 16 months, in April 2024. We started seizure medicine.

We knew seizures were common in people with Angelman syndrome, but the experience still felt surreal when they arrived. Although we educated ourselves on the types of Angelman seizures and how to respond to them, nothing prepared us for watching Jude go through them. We panicked and didn’t follow proper protocols. We felt helpless and worried as we comforted Jude, both amid the heart of the seizure as well as its post-ictal (end) phase, when he became inconsolable.

In the past year, we tried our best to avoid common seizure triggers, such as fevers, sickness, poor sleep, or constipation, but we knew medicine might eventually become necessary when the frequency of Jude’s seizures increased. But when “eventually” became “now,” it still hit hard.

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Anxiety

We started seizure medicine after I noticed Jude having one during his nap. It was a complete fluke; I glanced at the baby monitor and saw repetitive, jerky movements in his arms and legs. Once I realized the movements were abnormal, I managed to take a short video, which later helped his medical team understand what had occurred.

But I wasn’t watching the monitor on purpose; I just happened to look. What if I hadn’t? Had there been other seizures that I missed? Do we now need to monitor his sleep at all times?

We can’t always be watching our loved ones living with Angelman syndrome, and we may sometimes miss something important. Learning to live with that anxiety has been one of the hardest parts of our journey. We’ve had to remind ourselves that all of Jude’s caregivers, including ourselves, are just trying their best.

Doubt

We were advised to start Jude on seizure medication almost immediately after his most recent attack. We wanted the seizures to end, but the decision to start medicine for them, and their list of side effects, weren’t easy to come to terms with at short notice.

Those side effects hit instantly. Our bright, expressive boy was hard to rouse from sleep, and his once lively personality became flat. We were following medical advice, but still doubted ourselves and wondered if we’d made the right decisions. Our doubt was amplified when a pharmacist looked at Jude’s prescription and asked with concern, “Why would someone so young be on this medication?”

Within a few weeks, Jude adapted to his medicine and was back to his usual self (although he started to cry when he saw his pillbox!). We then felt a little more reassured, and his seizures have thankfully remained controlled.

Adapting to change

Practical and logistical aspects of our daily lives required some adjustment once we started seizure medicine. We had to stay on top of dosing schedules and changes in seizure activity. Figure out how Jude would consume tablets and other medications. Deal with medication if we’re out of the house or don’t have food with us.

We also had to adjust our expectations of what each day might look like. Some mornings, Jude would wake up full of energy, and others, I’d spend half an hour trying to wake him up. We left birthday parties and playdates early if we noticed Jude getting tired.

Starting seizure medicine required us to be flexible while sitting with anxiety and doubt. But for us, medication was a step toward reducing the risk of a seizure, even if it didn’t entirely erase the fear.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.