Additional Needs

Experiencing Epilepsy for the First Time

Posted by Amanda O'Neill on 20th November 2018 Additional Needs, Advice & Support, Disabilities

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Two years ago, epilepsy was just a word to me.

I was aware of what the condition was, but until I experienced it first hand, I did not know the effects it can cause on the individual who lives with the condition and the family members who are there to witness it happen.

The 27th September 2016 was the day I watched my precious baby boy experience a fit for the first time.

That day will live with me forever, the day I experienced a seizure for the very first time. As November is epilepsy awareness month, I thought that it was only appropriate to share Ryan’s story with you all:

I woke up around 8am on that Tuesday morning, to Ryan making the strangest noises. When I went over to check on him in his crib his left eye was frantically twitching and he was struggling to breathe due to little bubbles of foaming saliva coming from his mouth.

I screamed for his dad, Christopher, to wake up, he ran over to Ryan's crib and lifted him up - trying to make him more comfortable whilst I called for an ambulance.

A first response car arrived at our house, it was probably only minutes, but it felt like hours.

The paramedic confirmed that Ryan was experiencing a fit, he advised that he was struggling to come out of it on his own.

He gave Ryan medication, but the fit got worse, by this point my baby’s full body was shaking. He radioed over for an ambulance and Ryan was rushed to the nearest hospital by blue light, an army of doctors waiting for him.

They cut his baby grow off, and inserted drips for medication into his arms.

They fought really hard to stabilize him and bring him round from his fit.

It was Ryan’s first ever fit that day, a date that will stay with me forever. Over an hour it lasted the doctors advised - but to us it felt like a lifetime.

When Ryan was finally stabilized the doctors arranged for Ryan to be transferred to a children’s hospital. Ryan’s body was exhausted from the lengthy fit and heavy-duty medication, that he slept for 25 hours.

We spent two days in hospital with Ryan, before being sent home with rescue medication incase this reoccured.

December 1st 2016, just over one month from Ryan’s first seizure, he experienced another. This time the seizure only lasted 17 minutes with the help of rescue medication.

He was checked over at hospital, before they confirmed that Ryan has epliepsy. From this day onwards, Ryan has taken anti-seizure medication.

What does it feel like to be a parent of a child that has epilepsy?

This is a question I hear often. My answer to this is summed up in one word "Terrifying".

Each fit for me is just as hard to watch as the previous. His fits are so unpredictable that we have to ensure that his rescue medication goes everywhere with him.

It doesn't matter if it is a simple trip to the shops or a day out, we always have to carry it. We also have to ensure that anyone that is watching or caring for Ryan at any time is made fully aware of his condition, and how to counter it.

We also have to ensure that we keep on top of correct dosage for the medication, to suit his current weight.

Final Thought..........

Being a mum to a child with cerebral palsy I have seen and experienced a lot of unpleasant things happen to my son, feeling helpless each time.

However for me, watching him fit, helplessly and his body be so out of control, is the worst thing I have ever witnessed.

Ryan amazes me every time with how quick he is to recover with a smile on his face.