Alex's family.
From arguing pharmacology with a paramedic while Alex seized — to a card that said everything before a word was spoken.
Before Arcolia
Weeks that wore them both down.
01
A log that couldn't show a pattern
Two parents, one child, seizures at unpredictable hours. Whoever was closest logged what they could — duration, type, time of day, how Alex came out of it — in texts, in Notes, in a notebook by the bed. The entries were real but uneven. By the appointment, they had months of fragments. They had a strong sense the clusters were worse around fever illnesses. They couldn't show it. The epileptologist needed data, not a feeling.
02
The contraindication, in real time
Alex had a cluster night. By the third seizure they called 911. The paramedic was experienced and moved fast — and he drew up fosphenytoin, standard protocol for prolonged status epilepticus in his EMS system. Alex's father stopped him. He said Dravet Syndrome. He said the drug was contraindicated and would make the seizures worse. The paramedic had never heard of Dravet. He paused, asked questions, eventually deferred — but the conversation took three minutes, with Alex still seizing. His father was right. The medication was held. But he needed a card he could hand over without saying a word.
03
'Has he responded to the Clobazam increase?'
The epileptologist had increased the dose three months ago — that was in their own notes. What they were asking was whether it had helped. Fewer clusters? Any change in duration? Side effects? Alex's parents had been watching closely. They had an impression — better than before, maybe less clustering in the evenings. But they hadn't documented it. Their answer was 'we think it's helping' and they watched the doctor write something and move on. They left not knowing if what they'd observed had actually been useful.
Then they found Arcolia.
Same weeks. A lighter weight.
With Arcolia
The same moments, handled.
The fever correlation, visible
Right after an event, one parent says what happened — duration, type, time of day, whether Alex had been running a fever. Both parents log to the same timeline. Three months of entries, organized. Before the next epileptologist appointment, the fever-cluster pattern they'd only felt before was visible in the data. They walked in with something specific to show.
Nothing to explain. The card said it.
Alex's Emergency Passport leads with the contraindications: Never give Phenytoin, Carbamazepine, Lamotrigine. Then the rescue protocol. Then who to call. Offline-ready, no login. The next time EMS arrived, the paramedic scanned the QR code. She read the card before she opened her kit. Alex's father didn't have to say a word.
The response data was right there
The Clinic Brief had the three months since the Clobazam increase — seizure frequency, duration, the two illness clusters, the observation that evening events had dropped. The impression that 'it seemed better' was documented. The epileptologist had the response data, not just the prescription record. The conversation went from 'we think it's helping' to 'here's what changed and when.'
What made the difference
Daily Dump
Both parents can add notes from the same account. One log, always current, never reconciled by hand.
Emergency Passport
Leads with the contraindications — what not to give and why. Then the rescue protocol. Offline-ready, no login. The card does the explaining so the parent doesn't have to.
Clinic Brief
Seizure frequency, medication timeline, the moments that deserve a clinical conversation — all surfaced before you walk in.
“I used to spend the worst moments of my life explaining Dravet to strangers. The card does that now. I can just be with him.”
Alex's parents · Dravet syndrome
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