The whirlwind of epilepsy

A couple of weeks ago, whilst Jaxon was still in bed I was carrying out the arduous early morning routine of preparing medication and feeds for the day.

He was still hooked up to his sats monitor, he usually is when I’m not in the room with him.

Then the beeping started.

I waited a few seconds before succumbing to the urge of needing to check he was okay.

What I walked into, I was neither prepared nor ready for.

Jaxon was having a tonic clonic seizure.

His epilepsy is refractory and very complex following a diagnosis of infantile spasms in May 2019 that we were never fully able to control.

But tonic clonic seizures, the type that you often see on the TV, are rare for him.

They’re the type of seizures I have to be prepared to give rescue medication for but in that moment I went into a full panic seemingly forgetting everything I needed to do.

I felt myself crumbling as I fumbled for my phone to try and film some of what was happening.

It may sound unusual but it’s handy to have a minute or two of video evidence to show his team so they know what we’re dealing with.

I had hoped once I’d stopped recording that the seizure would’ve stopped but it hadn’t.

I have roughly a five minute window before I administer rescue medication but both his sats and heart rate were dropping.

I panicked, I called my mum.

But less than one minute into the call I said I need to call an ambulance and cut the call off.

As I made the 999 call I was already prepared for what they would say. “Is the patient breathing?” followed by “is the patient awake?”

It’s a routine I’ve gone through many times since the birth of my child so I know exactly what to expect.

“Is the patient breathing?” the operator asked me. “Yes he’s breathing, yes he’s awake but he’s having a seizure and it’s not stopping, please send an ambulance, he’s two years old, please help me, please.” I begged.

How I managed to fumble my way through the call I do not know.

I was hysterical. I thought I was going to lose my child in that moment and there would be nothing I could do about it.

As I was on the call I begged Jaxon to stop fitting, I just needed him to be okay.

I ran to the door to open it and ran straight back to him.

The operator was warm and calming but I knew she could sense the panic in my voice.

She kept telling me how well I was doing but I felt like I was failing him.

I was counting down the seconds, do I give the medication? Do I wait?

He’d have brief moments where he would seem to stop then he’d go straight back into it again.

It took all of about four minutes for the rapid response paramedic to arrive although it felt like about four years.

No sooner had he entered Jaxon’s room, he stopped seizing.

The relief crashed into me and I felt my legs begin to buckle.

I had hold of the rescue medication, ready to administer it but I was so thankful I hadn’t needed to give it.

His heart rate and sats started to correct themselves again whilst Jaxon looked at me seemingly wondering what all the fuss was about and who this stranger was in the green and yellow uniform stood over him.

Shortly after, the paramedics arrived and despite the fact the seizure had stopped, it was agreed that it would be in Jaxon’s best interests for him to be checked over in hospital.

So we headed there in the ambulance.

We were only there a couple of hours and luckily we had a chance to catch up with Jaxon’s paediatrician who made a couple of small alterations to his seizure medication.

As we arrived back home and I carried Jaxon into his room, I was instantly reminded of the fear, devastation and pure helplessness I’d felt that morning.

Once I’d safely put him down I broke down in tears.

I felt myself being consumed by grief and anxiety that this could happen again.

You can never truly prepare yourself for the moment it happens again, you just have to dig deep to find a strength you likely didn’t even know you had to simply keep going.

You keep going in the hope that it won’t be today, tomorrow or even the day after that you’re faced with a challenge so frightening that you feel so powerless to control.