The Demon Epilepsy

November is National Epilepsy Awareness Month and so I wanted to do my bit to improve the understanding of the condition. I had no experience of epilepsy until we had Joshua and so I like many others, only associated it with people lying twitching on he floor, foaming at the mouth – as I had seen one of this type of seizure at school in the PE changing room once before – and it was definitely something to be feared. No ,from first hand experience, I appreciate that there are so many different types of seizures and they do not all have to be the traditional Tonic Clonic presentation. Absences can be much more subtle – they can simply look like a loss of concentration for a few moments, rather like daydreaming , so are not dramatic at all. In Joshua’s case, these mild absences often indicate that something more dramatic is ‘brewing’.

For Joshua, all of his seizures affect his eyes in some way : with absences, he tends to look upwards and stare at the sky. Most seizure types cause his pupils to enlarge and often that can be an indication that a seizure is on its way. For his full blown, tonic clonic seizures, his eyes can roll up inside his head or his pupils can be facing different directions from each other. So his eyes are a useful indicator that something is wrong.

The most frightening type of seizures are the full Tonic Clonic ones and at their worst, it was as though somebody had shoved Joshua very hard backwards or forwards, or even thrown him, as he fell to the floor with such force and rarely with much warning. All of his limbs would be stiff and so he would not crumple like a normal fall and he would have no power or instinct to put his hand out to break the fall. So inevitably he would hit the ground, or furniture, with real force and often his head would take the impact. As Joshua got taller, the chances of him hitting a hard surface increased and even when wearing his helmet for protection, somehow he still managed to damage himself. He has scars all over his head and body from injuries sustained from such falls and we have had several trips to A&E as a result.

Fortunately, these days he is less likely to incur that type of seizure; nowadays he has clusters of seizures where his whole body will tense and tremble for seconds,  while his breathing becomes noisy,then he will relax briefly, before another takes hold. If this pattern lasts for longer than 5 minutes in total, then it is time to introduce his rescue medication, which is a form of anaesthetic, to relax everything. Thankfully Joshua no longer has rectal emergency medication, his Midazolam is released into his gum area, where it is quickly absorbed and within ten minutes, if it has not settled the seizure down, which is almost always does, then it is a 999 call for an ambulance as we cannot give a second dose, as there is a risk that it will compromise his breathing. It means that Midazolam needs to be carried everywhere he goes, just in case. We had to use it last week on holiday and he almost had it on Tuesday night too, but thankfully the seizures stopped on their own with no intervention from me.

And that is one of the problems with epilepsy,  nobody knows when the seizures will strike and so you have to be constantly on red alert. Joshua’s main triggers are heat, illness, tiredness and excitement and any one of those may set his seizures off, he is not affected by noise or flashing lights as some sufferers are. We do all we can to keep him cool in hot weather as that impact is predictable, but excitement is a cruel trigger : just when he is having fun, bammm epilepsy strikes to take the joy away and create a drama. One instance of that was while at a Bruce Springsteen concert a few years ago, one minute he was happily giggily away loving the music and the next, he looked terrified and he had to be laid down on the floor and to take his Midazolam, we all missed the rest of the show.

Joshua has  severe learning difficulties and a weak right side, but I would say that it is his epilepsy that has impacted on him most throughout his life and is the condition that looms over him always, threatening to take hold. Even with 15 years practice of dealing with his seizures, they are still frightening. I may have learned to be outwardly calm and reassuring, but internally, they make me feel sick and scared every time.