STARS Patient Information
Tristan is 8 years old, and despite a struggle to find a reason for his episodes, he does not let RAS stop him from being an active, sporty child. Here, his mum Jo tells us about how he was finally diagnosed.
“Tristan is a football mad 8 year old living a very active life. He also has reflex anoxic seizures (RAS).
Tristan was 14 months old when he had his first RAS attack. We still don’t know what triggered it, but he was crying and when I picked him up he went limp in my arms and then went stiff and white. His eyes rolled back, and his arms were jerking. He was taken to hospital and admitted for observation. This is where the very long road to diagnosis began.
Over the next few years Tristan continued to have RAS attacks every few months, but they didn’t always have obvious triggers and he was too young to really explain what he had experienced. Between the age of 2 and 6 Tristan had a barrage of tests trying to find the cause of these episodes. It was complicated by the fact that his father has epilepsy as do other members of the family which made this a likely cause of some of the seizures.
He was placed under the care of 3 consultant paediatricians, a general one, a neurologist and a cardiologist. He had multiple ECGs, a 3 day EEG which involves having wires glued to his head and carrying a box around to record the electrical activity of the brain, a portable week long heart monitor, an ultrasound of his heart and several blood tests. The results of these revealed a heart murmur, incomplete heart block and an abnormal background EEG reading which could indicate epilepsy or just be normal for him. This all made diagnosis more complicated.
We kept detailed diaries of all events and some of them were witnessed by hospital staff on his many admissions. Things would be fine for about 6 months and then suddenly he would have 3 or 4 attacks within a week leaving him emotional and exhausted. As he got older he was able to explain more articulately to the doctors what he was experiencing and tell us about triggers which hadn’t been obvious to us when he was very small such as having a bad tummy ache or head ache which had triggered attacks. It was ultimately this detail from Tristan which allowed his consultants to get together and agree that all events were RAS. Tristan was 7 when he finally got a diagnosis. We were overjoyed to know that it wasn’t epilepsy or a serious heart condition and set about supporting Tristan to make sure he could do the things he wanted to do as safely as possible.
Tristan still has a few attacks each year and has a care plan for anyone looking after him. He wears a medic alert bracelet, so people will be aware of what to do if he has an attack. RAS doesn’t stop Tristan from doing anything. He plays football for his school and a local club, runs cross country, swims, climbs and has even had a go at rugby. Tristan is doing his bit to raise awareness of RAS by explaining it to people when they ask about his medic alert band.”