Additional Needs

E is for: Epilepsy

Posted by Sam Bowen on 15th May 2016 Additional Needs, Disabilities

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I was having a dream, more of a nightmare really that I was carrying Lucy in a baby sling and she’d fallen down too far, head squashed against me and couldn’t breathe.

I awoke with a start and then realised that her scream had woken me.

It was a blood curdling, wake the street up kind of scream and I was out of bed and by her side in seconds.

She was sitting bolt upright staring forward and unresponsive, then her tongue started darting in and out of her mouth she started drooling.

Her eyes then drifted off up to the top right and she fell back onto the bed.

It was 2.30am on a Sunday morning and I had absolutely no idea what was happening but instinctively knew I must call an ambulance.

My husband had flown into the room with me and was now cradling her listless body on his lap.

She was due heart surgery in a few months time, so at that point I genuinely thought she was having a heart attack and we were losing her.

The 999 phone operator was amazing, she kept calm getting me to speak clearly.

Then as I told her our details, Lucy’s right arm started to twitch, subtly at first and then more noticeably.

Then her right leg joined in and within a minute her whole body was jerking.

Ridiculous as this now sounds, I was overwhelmed with relief that she was having a seizure and not a heart attack.

I knew nothing about epilepsy apart from thinking it was fairly common and curable.

She remained that way until the ambulance crew arrived and took over.

They administered diazepam and nothing happened. Her breathing then became laboured and the sense of urgency in the tiny nursery stepped up a pace, we were going into A&E on a blue light.

The paramedic gently scooped Lucy up in his arms like a broken little bird and carried her to the ambulance.

The blue lights danced off of the neighbour’s houses and woke some of them up.

My husband drove behind us in his car whilst I sat numbly in a ‘jump seat’ in the back of the ambulance watching the Paramedic try to revive my daughter.

It’s a long 25 minute journey to our local hospital and in the middle of the freezing cold night it was also foggy.

Despite the trauma unfolding, there was a kind of peace and calm in the ambulance, a sort of protection. No one spoke.

That all changed as we arrived at the A&E department and were met by a team of doctors.

Still shaking in a constant seizure, Lucy was laid on a bed, surrounded by medical professionals.

They spoke quickly to each other, applied monitors to Lucy and tried to get a cannula in to medicate but it was futile.

In the end they asked us if they could access her blood supply in her bones and we watched morbidly transfixed as they plunged needles into her shins like they were butter.

On the second attempt it worked and yet the medicine they gave her still did not stop the seizure.

She had been fitting continually for an hour and a half.

There was talk of inducing a coma to give her little brain a rest, an air ambulance to London was mentioned as they explained it was too complex for them to deal with.

Then miraculously the seizure stopped.

But then the fall out started. Cat scans, admission to the children’s ward for 48 hours observation.

Detection and treating of the underlying infection that had caused her spike in temperature and the seizure.

We went on like this for another eight months.

Because of her age (2 ½) doctors assumed they were febrile convulsions due to high temperature.

It wasn’t until one of our stays coincided with a paediatrician on call who is an epilepsy specialist, that the E word was even discussed with us.

She had another six seizures, each one different.

The second one only lasted a few seconds and went away on its own.

The third she stopped breathing in my arms and turned blue.

Luckily we had rescue meds by then and quickly giving them to her she came round and started breathing again.

All the other times we have had to call an ambulance because the seizure either didn’t stop or her breathing became laboured following rescue meds.

We now know she has Status Epilepticus, or seizures which don’t subside within 5 minutes. It’s bad, very bad indeed.

We count our blessings though, thankfully she only gets them when ill, so we are extra vigilant with that.

She is responding very well to the epilepsy medicine and we have now been able to manage any breakthroughs at home by having a no wait on rescue meds.

Lastly the thing that has made all the difference to our lives, and given our sleep back to us is an epilepsy alarm called Pulseguard, created by parents of a child with epilepsy.

Lucy wears the watch like monitor at night and it sets off an alarm if her heart rate goes too high or low.

It’s saved her life once already, so even though it is a little expensive, to us it’s priceless.

So that’s it. Mr E stormed into our home one November night and tried to tear us apart, but you know what,

So far, he hasn’t won and we will do our best to make sure he never does.