After around four weeks of these symptoms becoming more frequent, we took him back to A&E and said we suspected Archer was having infantile spasms, after seeing a video of these online. We were told again that it was colic and almost discharged, but thankfully a doctor finally saw Archer having an episode and suggested she get a specialist consultant to call us in the morning. The consultant did call, asking us to upload videos to the vCreate app, and arrange an EEG for Archer. We were then told four days later that Archer was indeed having epileptic seizures, around 15 per day by this point, and he was admitted to hospital immediately.
We were so scared when we heard his diagnosis. We didn’t really know anything about epilepsy or what was going to happen next. However, we were relieved someone had finally recognised something was wrong and that treatment could begin. We now know that had his epilepsy remained untreated for much longer, it’s quite likely that Archer’s development would have been severely affected.
How has epilepsy interrupted your family life?
Epilepsy interrupted a crucial development stage for Archer and has taken time away from him where he should have been safe and sound at home with his twin sister. Instead, he was in hospital having lots of tests carried out. His little body has been through so much and it’s been heartbreaking to watch our tiny baby go through what he has been through.
What are your hopes for the future of research into epilepsy?
Probably like most, we hope for a complete cure. In the absence of that, we hope that Archer can always receive medication that gives him 100% seizure control with no side effects.
– Amanda, April 2021
You can support the family’s #Brainathlon efforts for Archer here.
Read more about Professor Sameer Zuberi’s vCreate Neuro platform here.