You may have noticed the purple ribbon symbolising epilepsy awareness on Firefly’s special needs community page this month. If you click on the ribbon, it will take you to a page about National epilepsy awareness month (in the United States). 

I will be the first to admit that I DESPISE EPILEPSY!  

Watching your little baby, toddler or child have a seizure (or ‘fit’ as some people refer to them as) is a scary thing.

Two of my daughters have been diagnosed with epilepsy and I have witnessed them having multiple and horrible grand mal and complex seizures.

You feel unprepared and helpless as you watch your little one shaking, jerking, unresponsive, pale.

Even though I’m a nurse, and have training and experience in dealing with seizures and other emergencies, it’s very different when it is your own child!

Inwardly you find yourself asking “Is this really happening?” I have called the ambulance for back up numerous times.

On some occasions we’ve had to go into hospital.

I have given rescue breaths, used portable oxygen, put them into recovery position, used rectal and buccal rescue medications on the girls and taken videos to show the neurologists (for diagnosis).

We are familiar with brain scans (MRIs), brain activity studies (electroencephalogram or EEGs), rescue medications, epilepsy management plans and anti-epileptic drugs.

I am SO THANKFUL that we were able to wean my seven year old off of her epilepsy medication during the summer.

She started having seizures as a six month old baby, but thank God she has been seizure-free now for three and a half years and has no other health issues or disabilities.

My youngest only had her first seizure after she’d turned four years old.

The paediatrician and neurologist both weren’t surprised she’d had a seizure, as she supposedly has a ‘lower threshold for having a seizure’, due to her history of a brain bleed and resulting cerebral palsy.

Thankfully she has now seemed to stabilise on daily medication (Epilim). She’s had four seizures to date. Both girls have had several EEGs and nothing ever conclusive drawn from the results.

Epilepsy is a broad term to describe seizure disorders.

Anyone can develop epilepsy at any stage of their life. It is a largely unseen medical condition (unless you are in the throes of a seizure).

Would you be able to tell from this picture that both little girls have epilepsy?

It really is something we don’t think much about unless we are unlucky enough to have it happen to us…

As I reflect on Epilepsy awareness month, I am so grateful for advances in modern medicines – without which we would not have drugs to prevent seizures (anti-epileptics) or drugs to calm activity during a seizure (rescue medication). 

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