It finally came about quite by chance.
After all the episodes of finding him unconscious, an MRI scan (under a general anaesthetic), visiting a specialist, and recording everything down, I finally caught the very beginning of these episodes, and managed to record it on my phone, which I knew was vital for the specialist to see - as we never saw the beginning of each one, there was a mystery around what was happening.
I had installed a basic baby monitor in his room, and every night I had the parent unit on the highest volume, in the hope I not only would hear when he goes into the unconscious stage (he makes a gurgling, snorting, snoring noise), but to be on alert for anything else.
One late night, at around 1am, I woke with a start, as I heard a noise that sounded like a cry out. I sat bolt upright, grabbed my phone, and raced to his room. I just knew it was urgent and not a false alarm.
There I was greeted with the sight and sound of him having a full blown seizure.
I have never seen first hand what a seizure looked like, and to say I was shocked would be an understatement.
I'm very good under pressure however, and my instincts kicked in straight away.
His arms were up in the air, his whole body was jerking uncontrollably, his head was shaking violently, his eyes were open, but had rolled back into his head, and he was making an awful noise.
This lasted around three minutes.
When he had stopped the fitting, he went into the second phase, the phase I always came upon, and to which had been confusing the specialist and myself as to what was happening.
This phase can last a very long time (in regards to the 'normal' time frames for this kind of thing.
It was interesting and highly informative to see what was happening, and to finally get it recorded as proof.
I telephoned the specialist's secretary the next morning, and left a detailed message. I was contacted later that day by the epilepsy nurse who works with the specialist, and she asked me to 'Whatsapp' the video to her (there are some benefits to technology!).
The next day she telephoned again, and said herself and the specialist could see from the footage that the fit was classed as a 'tonic clonic' fit.
An emergency appointment was made to see them, and after going through every episode again (it gets quite easy to reel off each episode I've witnessed, as I've had to repeat it so often), and the confirmation of my latest video, J was given an official diagnosis.
Another word was mentioned, and I'd never heard of it before.
SUDEP
This stands for Sudden Unexplained Death from Epilepsy.
As J's epilepsy only occurs at night, his type of epilepsy seizures are called 'tonic clonic', he takes a long time to recover, and is unconscious for such a long time after the initial seizure, and he has had over 30 of these during the last 6 months, his risk of SUDEP is very high.
There is a decision being made on what medication to prescribe him, but the side effects from them are a significant risk too, and the specialist is worried about them. One of the drugs suggested can cause extreme weight gain, and as J is really tall and well built (not obese, but stocky), and another can cause mood swings and violent outbursts, which would not be safe or healthy considering his size, and the risk of his younger siblings, it's a difficult choice, but a choice that has to be made.
I have included some links below, which will take you to genuine web pages that explain further about 'tonic clonic' epilepsy and SUDEP.
SUDEP Epilepsy Society
Tonic Clonic Seizures
