Epilepsy-the hundred-headed shape-shifter

Sorry not sorry for the angry undertone of my title. We've been struggling with a seizure shitstorm for the past while. I say we for a reason. Epilepsy takes no prisoners in relation to who it affects, and although B bears the brunt of the brainfuckery, the whole family reaps the unsavoury results.

Usually, when someone mentions seizure, the first thing that springs to mind for most people is the classic jerking fit. B has (thank fuck) only ever had a handful of these. Before my up close and personal encounter with the epilepsy hellscape I would have thought the exact same thing. But it's a myth. The reality is seizures can present in a million different ways; it's like the ultimate hundred-headed beast. 

Considering our very existence boils down to billions of electrical signals being fired at lightning speed inside our heads, it's not surprising that when it all goes to shit, this could pretty much mean anything in terms of what actually happens. Everything is controlled by those little neuron firings-from the basics of breathing through to the philosophical musings of meta-cognition. 

B's seizures are vast and varied, and according to his EEG (ElectroEncephaloGram, if you're interested-the billion wires attached to his head which make him look like some sort of freaky zombie experiment) he is experiencing abnormal epileptiform brain activity pretty much all the time. Yup, you heard me right. ALL. THE. TIME. And just to keep us on our toes, the seizures evolve. The monster grows more heads at random, and without warning. 

B used to have seizures that physically threw him backwards across the room. It literally looked as though an invisible force picked him up off the ground and flung him a few feet. With force. You can absolutely understand why medieval superstition reckoned people with epilepsy were possessed. Our friend accurately named them 'Hulksmash' seizures for ease of recording. And to make it extra fun, these can happen at any time, anywhere. I remember one particularly awkwardly timed seizure which struck when B was on the top of a playframe just about to go down the slide. I was on the ground and had to employ swift Ninja catching skills as he was literally catapulted backwards off the playframe and into my arms. 

Other times he has head drops. Or, more accurately, head smashes. Before he had a helmet, the poor kid was constantly covered in forehead cuts and bruises from his body deciding to forcefully faceplant the object directly in front of him (often a table, or a toy). Now the force is somewhat lessened by the snazzy teal headgear he's had to get used to wearing on the daily. Fashion perks.

A current favourite of B's particular seizure monster is the 'Frankenstein'. Here, his eyes roll up to the side, his head drops down and his arms shoot out stiffly in front of him. These can last a while, and often morph into other types of seizure, just for the lols. The most heartbreaking thing about the Frankenstein is he is conscious throughout. He tries to crack on with whatever he's doing-eat food, play with the ipad-whatever, and his body just isn't his own. What the fuck that must feel like I have no idea. For a lot of his seizures he's not conscious, and comes round afterwards with a bemused look of chaos, but this one totally sucks. 

Others are more subtle. Take the shitly timed absence, which chose to strike just as we got off the bus. B LOVES the bus, and so we'd headed out on an adventure. Exiting the bus is a faff at the best of times-trying to steer him and his buggy in the right direction while also ensuring you've left none of the essential paraphernlia behind is enough to cause anyone a nervous breakdown. Anyway, picture the scene-he's ahead of me, and just as I'm about to shunt him down the step he freezes. Musical statue style, completely stops, as though someone presses pause. We stand there waiting for a good thirty seconds, during which time some impatient idiot tries to push past while the bus driver over-obviously checks his watch as though this thirty seconds will make up for the 15 minutes he's already running late. I turn to the passengers queuing behind me and speak up. "Apologies, my son is currently having a seizure. You'll all need to wait. Thanks for understanding." I might have muttered something ruder under my breath at the push-past prick, but I can't exactly remember...;-) Not my favourite journey, I'll be honest.  

Although the absences seem harmless, they tend to cause B the most distress, with the recovery time on these probably being the longest. Sometimes they last a really long while too. This past weekend has been horrific- he was absent seizing pretty much all weekend (with some Frankensteins thrown in for good measure), sometimes completely passing out. He actually threw up as well, which we've not seen before-his body had just had enough. Over the Christmas holidays he had a prolonged absence at home, and BH happened to be there. She watched him pretty much lose consciousness (his breathing changes and he goes a funny colour too), and she spent the whole half hour asking whether he was going to die. That, my friends, is a complete shitter. As a parent, watching one kid having a nasty seizure while the other freaks out about them dying AND trying to manage the whole thing with some semblance of calm is rough. As it was, we gave him some extra meds and he eventually came round. But that emotional trauma isn't something anyone should be routinely subjected to. Especially when that anyone is eight years old. 

And that's where the 'we' I mentioned earlier comes in. To keep B safe, whoever is looking after him has to be on high alert the entire time. Cue chronic stress and eventual PTSD. They also have to deal with the staring and fuckwittery of Joe Public who often stand around open mouthed and helpless. The hundred headed beast gives precisely zero fucks when, where, or how it strikes, and we're unfortunately constantly at the mercy of an ever-evolving shitstorm. 

Thankfully he doesn't stop breathing anymore. From birth through to 18 months he would stop breathing at random. I got used to it, and he automatically rebooted every time, but managing random strangers' freak-outs in Sainsbury's was pretty tough. And I do know kids whose seizures literally just kill them for a moment, and who need resuscitating every time. I'm truly thankful we're not there. But kids with B's type of epilepsy- a type notoriously difficult to control with medication- are at risk of sudden death. His underlying chromosome disorder also carries with it a risk of sudden death; the poor kid doesn't exactly have favourable life odds in any corner. In fact, the global network I'm plugged into for B's condition regularly reports about children who have passed on, mainly due to epilepsy. Given that there are only a few hundred of these kids worldwide, it hits home every time. Every. Single. Time. And every single time I wonder whether B will feature in that next report. 

So yeah. Epilepsy. The hundred-headed, fire-breathing dragon of a beast that just won't let up. Where the battle seems nigh on impossible because you're completely unsure of what's coming next, and you have no idea which tactics will work anyway. 

It's unfair, it's exhausting, and it's cruelly all consuming. But we have to keep fighting. In the words of Joyce Byers from Stranger Things, "This thing's had Will long enough. Let's kill the son of a bitch." 

If only it was as easy as destroying a demagorgon...... 

Screw you seizure monster. Screw you.