Today, as well as being day xxx of the global Coronovirus Pandemic, is Epilepsy Awareness Day. Epilepsy awareness has come into my life in a pretty significant way over the last couple of years.
A bit of context – at around 6 months old, last year, our daughter Orla started having seizures and was diagnosed with a rare form of epilepsy called West Syndrome. In short, Wests can be REALLY BAD. We will forever be indebted to the UKIST charity, as without their website we probably would not have recognised the type of seizures that Orla was having and she would not have got treatment so quickly. Wests is so rare that a number of medical professionals did not recognise her seizures and it was only because we were equipped with this knowledge that we were able or argue for the urgency of Orla’s need.
Epilepsy Awareness, you see, is vital.
To our cautious relief, after two gruelling courses of steroids, numerous MRIs and EEGs, and other medication Orla has been seizure free for six months. She faces a number of challenges but the epilepsy was being held at bay…
… until Saturday, now 17 months old, in the midst of Covid-19, Orla started with a different form of seizure, every two hours, day and night. Twelve seizures per day.
As the brilliant epilepsy nurse said to me over the phone, “There probably isn’t a worse time for this to be happening”. Gulp.
However, we were given a face-to-face emergency appointment with her consultant yesterday. She’s amazing, our consultant. Incredibly clever AND kind.
The seizures that she is having now seem to be focal seizures, so not the same kind of epilepsy as before. She has been prescribed two types of medication to try, as well as having an emergency EEG this morning to try to find out more. Nowhere had the meds in stock yesterday so hoping they have them ready for today.
Again, thanks for being kind, people. I know everyone’s got their own personal issues they’re going through at the moment.
And I’m sure it doesn’t need saying but please stay at home in order to free up the NHS to provide all of its essential services in these exceptionally difficult times.
[Orla pictured yesterday.]
Update: Sadly Orla’s EEG results showed signs of the return of West’s Syndrome. She’s started another course of steroids today, meaning she is immunosupressed and therefore vulnerable to Coronavirus. We are all now self isolating for at least 12 weeks.