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Epilepsy Seize The Moment

Epilepsy Seize The Moment

I'm sure I don't need to tell anybody that though.

My son was diagnosed with epilepsy in October 2015 after a two-and-a-half hour - (yes, 150 minutes!) - seizure landed him in PICU, intubated and ventilated - unable to breath for himself.

He had experienced seizures before this when he was on the cooling mattress in NICU, over 9 hours on his worst days.

Then as he grew older, they became very few and far apart, until that awful day in October 2015, when I thought I'd lost my baby - just 17 days before his 3rd birthday.

Watching his tiny body uncontrollably shake whilst over 12 doctors, nurses and anaesthetists ran around him, sticking needles everywhere to try and find a vein that hadn't already been overused.

Then using what I can only describe as a DIY drill to gain intraosseous access into his shins, just to give his body the fluids needed to keep up the fight.

Intravenous access was no longer an option so they injected directly in the marrow of the bone to gain an entry point that wasn’t collapsible to provide fluid and medication.

After what felt like a lifetime, the decision was made for him to be anaesthetised and sent to the nearest children's hospital with a paediatric intensive care unit which was over 50 miles away.

He was sent in an intensive care ambulance as a time critical call.

That journey was the longest journey of my life.

Sat in the front of the ambulance, as there was no room in the back, blue lights flashing and sirens wailing, I felt like I was stuck in a time warp - not moving anywhere.

It was that moment, that very moment when I looked over my shoulder, through the little window into the back, the anaesthetist looked back and smiled - they'd finally gotten a response (albeit the smaller respiratory effort, but, it was a response).

It was then that I saw the first glimmer of hope, my boy was fighting.

Fast forward a week on PICU and a further month in hospital, my boy was home and on medication to help prevent seizures.

Ever since my son was born I've appreciated every-single-moment, but since his epilepsy diagnosis and the realisation he could be taken from me at any time - I've learnt to ‘seize’ every moment.

Take pictures, smile, laugh, do silly things, cuddle as much as you can, love as hard as you can.

Because it could all be taken away, just-like-that.

Since being on medications, we've 'only' seen between one and three seizures a month.

Each one displaying similar traits.

It never gets any easier though.

Each minute seems longer.

Each time his lips go blue from the inadequate breaths he takes whilst seizing.

Counting down the minutes until I can administer his buccal modazolam, in the hopes it will stop the seizure in its tracks.

After every seizure you can't help but wonder what damage it could have done to his tiny body.

After his big seizure in October 2015 he was blind for over 3 weeks.

Thankfully, his recent seizures have been under 10 minutes and he's slept them off after having his rescue medications.

We've also been dealing with a lot of neurological irritability recently.

Our epilepsy nurse has also mentioned 'auras', an aura can be anything from a funny taste in the mouth to seeing flashing lights or a really, really bad head ache.

Now, my son cannot communicate his needs, so his only way of notifying me of his unusual feelings is to cry.

Not his normal cry.

A high pitched almost shriek like noise.

Life with a special needs child is hard, a special needs child with epilepsy makes it even harder.

Going out is hard, enjoying outings can be even harder.

But if you can…

Get out and ‘seize’ the moment.

Make memories.

Love.

Laugh.

Live.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emmy Heaton

Meet Our Blogger

Hi I'm Emmy, mum to AJ who has cerebral palsy.

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