Our purple prince

I wrote a blog about epilepsy back in November 2020 for awareness month. It’s rolled around now in March for the Epilepsy Society’s “Purple Day” on 26th.

I volunteered to write a blog about it and then honestly became completely stumped.

Don’t get me wrong, I’m under no illusion everyone reading this now has read all my blogs.

One of the huge benefits of this type of writing is you can “dip in and out” as you want or are able to.

So do I simply repeat what I said then? What do I want people to know about Epilepsy?!

When I was working as a nurse in a home for people with neurological disabilities, I supported several clients who were known to have epileptic seizures.

I’d studied this in uni and seen it quite often during clinical placements since I specialised in Learning Disabilities.

Why? Well, the more severe a learning disability is, the more likely it has been shown that the person will also have epilepsy unfortunately.

It was something I felt confident in so ended up volunteering to be my work’s “epilepsy link nurse” to liaise with the community and hospital teams who also shared care with our clients.

I left work to have my triplets back in 2014, which seems like just yesterday in so many ways yet also a whole other lifetime!

When our little boy was born with spina bifida, our world was turned upside down.

As a triplet and a preemie, he was facing an uphill battle as soon as he was born weighing just 2lbs 10ozs at 32+4 weeks gestation.

We were incredibly fortunate then that he had a very “smooth” stay in NICU, “graduating” to SCBU fairly quickly for growth only prior to his back closure.

After the initial operation on his back, the pressure built up in his brain and he was diagnosed with hydrocephalus and whipped off for another surgery to fit a ventriculoperitoneal shunt to control it.

It was then we were told he was more likely to develop a learning disability and/or epilepsy.

It wasn’t the biggest shock ever then when he was diagnosed in 2018, but wow, did it hurt!

How the world had also changed even in that short time since I was practising.

The old terminology of “simple partial” and “complex partial seizures” seems to be replaced with “focal aware or unaware”.

What a steep learning curve we have had despite my own previous background in epilepsy.

So what would I tell parents of newly diagnosed children?

Firstly, know your enemy.

Epilepsy is a wildly variable condition and the best way to combat this is to study it as much as you can.

When I say study it, I mean learn what it looks like for your child.

What does a typical seizure look like for them? Is there anything you can identify as a trigger? What helps / doesn’t help them recover? Do they need emergency medication and if so what dose/timing works best?

Any pieces of information you can give the neurologist will help put the jigsaw together to form a more complete picture.

The second thing I’d say is find your people and lean on them, hard.

This is not an easy journey and one that should definitely not be underestimated.

You will need support that you can rely on and people who will be gentle when you go a little off the deep end from time to time (thank you to my people who have stayed through the storm!).

I know this advice is given often so I am only repeating wiser people’s words but really...you will need help so that you can fight with renewed energy everytime you’re up against a wave of seizures or particularly “big” ones etc.

The third (and final) piece of advice I’d give is to stand your ground.

People will sometimes try to offer what they feel is a solution and whether they are a neurologist or a family friend...don’t follow that if you don’t feel right about it.

My husband and I don’t stay away from home, and we don’t go far during the day either for fear of Jacob needing us.

There are people who say we need a break and despite them being completely right, I am most settled when I am near to him in case of prolonged seizures.

I don’t want to leave him, not yet.

There have also been medical professionals who have asked silly things like “are you sure that’s a seizure?”, “does he really need rescue meds?”, “at least it isn’t a big epilepsy like tonic clonic seizures” etc.

The bottom line is I am more than willing to take advice from the qualified professionals but I do not comply without question.

Push your teams to find better answers if you feel more avenues need explored, as long as you are able to accept when it’s time to go with their advice.