Blogger Astrid Plugge is creating a series of blogs for Technology for Home about her search for the right healthcare technology that can supplement the care of her son with severe, drug-resistant epilepsy. In this blog, Astrid talks about her experience with the Nightwatch, which warns of nocturnal epilepsy attacks.

My son Ilya suffers from severe epilepsy (difficult refractory epilepsy). Although no clear diagnosis has been made, his condition appears to be worsening. We have tried dozens of medications, but nothing has helped. Ilya is 11 years old and loves watching videos, joking and scouting. Unfortunately, Ilya cannot cycle on public roads, swim or be alone at home because of his epilepsy. He has constant seizures, which makes him chronically fatigued and never really feels 100%. A normal life as a typical 11-year-old is not possible for him.

Most concerned

But that's not what keeps my husband and me awake at night. It is SUDEP, an abbreviation for 'sudden unexpected death in epilepsy', that worries us most. It is the leading cause of death related to epilepsy. 20% of patients with uncontrollable epilepsy die from it during their lifetime. We try not to think about these figures too often, but they still occur to us regularly.

Constantly vigilant

Ilya's well-being is always at the top of our priority list, so we are always alert. This also means that as parents we rarely get a good night's sleep, because we are always listening for possible attacks during the night. For us, sleeping means being constantly vigilant for possible attacks.

Attack detection

We were drawn to the Nightwatch by healthcare technology advisor Maurice van Mourik from the municipality of The Hague. The Nightwatch is an advanced solution for monitoring epilepsy patients during sleep. It consists of a bracelet with a device that continuously records heart rate and movement. When a possible epileptic seizure is detected, an alarm is issued. The device can be connected to the internet so that attacks can be better mapped. You can also connect the Nightwatch to a telephone, so that people can be called when a possible epileptic attack is detected.

Lack of sleep

We took the opportunity to test the Nightwatch for a month, hoping that it would finally bring us some peace and reduce our worries. The Nightwatch employees gave us a demonstration and explanation of how it works. Ilya even received a nice book and a cuddly toy that would watch over him together with the device. We installed the Nightwatch at home, but unfortunately the nights did not go as we had hoped. The Nightwatch alarm went off repeatedly and seemed to give false alerts by interpreting movements and changes in heart rate that were not seizures as seizures. Ilya is a restless sleeper and makes frequent movements during the night, which triggered the alarm. In addition, he has a wide range of seizures, not only tonic-clonic seizures, but also atonic and absence seizures, although the latter are less dangerous. So the alarm went off more often than necessary, which caused us even more sleep deprivation. And sometimes the Nightwatch alarm didn't go off, even though we found Ilya frozen or sweaty in his bed, which were clear signs of an attack.

Unexpected

We got the same results whether we placed the band on his arm or his leg. After consulting with the Nightwatch staff, who were very helpful, we decided to connect the Nightwatch to the router. This way the attacks were better registered and we could see exactly why the alarm went off. This gave us more insight into what was a false alarm and what was real epileptic activity.

And then something unexpected happened. Our son suddenly had much better nights without seizures. Although this was great for us and we hadn't experienced nights like this in years, we haven't been able to test the Nightwatch in the past week and a half.

Still mostly positive

Although the Nightwatch did not turn out to be the solution we had hoped for, we are still largely positive about the device and will recommend it to people dealing with epilepsy. Particularly people who have less epileptic activities in their heads. This technological progress is promising and should be compensated for, which is currently not the case. The Nightwatch can make a world of difference for families dealing with tonic-clonic epileptic seizures, which cause respiratory arrest and require medical attention. Or for epilepsy patients who live alone or in assisted living. We believe it is a valuable tool that provides peace of mind and independence.

My search continues tirelessly, with the belief that somewhere out there the ideal tool is waiting for us.