6 years ago this month, I lost my sister. Why do they say that? We didn’t lose her, we knew where she was. Let me start again…
6 years ago this month, my sister died. She had been in intensive care for just over a week in a coma after having an epileptic fit. During the fit, she stopped breathing and therefore starved her brain of oxygen. She developed epilepsy after a head injury in her teens. She was 26 when she died. Having lost somebody I’d spent my entire life with, I can safely say I have seen the worst that epilepsy can do. Not just to the person suffering from it but for their entire family. So when Dexter suffered his first fit back in July, you can well believe it caused some stress.
I’d seen Kay’s fits before so I guess in some ways you could say I was used to them but it’s so, very different when it’s your own child. Watching Liam witness it for the first time was heartbreaking. I’ve never seen him so scared. Dexter has had a few more since that one and each one has brought with it memories of my sister and not in a good way.
Today, however, was the worst. Kay’s fiancé at the time said he called the ambulance because her last fit was different to the ones she normally had. Normally he would help her through them and manage them but with that one, she didn’t react the same way she normally did and today was the same with Dexter.
We’d both woken slightly earlier this morning and so went downstairs leaving Liam and Paisley upstairs. We’d been downstairs a little while and Dexter was making a monster out of paper, googly eyes and stick on gems like we had been doing the day before. He was sat at the table and I was on the sofa. He made a strange noise and I looked up just as his body went stiff and he fell sideways hitting his head on the bench. I shouted for Liam, raced over to him, picked him up and carried him over to the floor where I put him in the recovery position. His body was twitching violently and his throat was making a gurgling noise. I tried to film it as requested by the last consultant we saw. I realised that this was not like his previous fits as normally only his hands and feet twitch but this time he was much worse. In a split second my thoughts turned to Kay and what her partner had said and then I noticed that Dexter was turning blue. That gurgling noise he was making was him choking. Liam managed to get his mouth open a bit and he started breathing better. Still really laboured and wheezy but his colour returned and he stopped fitting. I still don’t know if the noise he made was involuntary as part of the fit or if he was trying to tell me something. I called 999 and they got a paramedic straight out. They asked me to say ‘now’ with each breath he took so that they could time them, they said not to move him and asked lots of other questions that I can’t even remember now because although in realtime it lasted 3 minutes, it actually all went so fast.
Once the paramedic arrived he started to come round slowly. We checked his head where he’d fallen and there were no lumps, no red marks and no bleeding. He said his head didn’t hurt so we took him to be ok. The paramedic checked his blood sugars, listened to his chest, checked his temperature and various other standard tests. As he came round he seemed back to his normal self and we were happy to have him recover at home rather than take him to hospital. From previous experience, once he’s back to normal, he’s fit and well and is fine at home and is much happier there than sitting in a hospital waiting for people to look at him. The paramedic was satisfied and left.
After 15 minutes of her leaving Dexter was sick! He’s never been sick following a fit before so this was another thing that made it different. At this point, I thought about taking him in but decided not to. We were still happy to keep an eye on him and he was happy in himself. We fed him some breakfast and got him dressed but then noticed he was being a bit clumsy. It was as if he was tripping over nothing and fell over 3 times. That was enough for me! The fit was different, he’d been sick and now he was falling over. I wasn’t happy that something wasn’t wrong so we took him into A&E to get him looked at and checked over.
Once there, we were in for a very long wait. He had a number of obs done on him and was seen by a few different doctors. He was tired and bored and wanted to go home and was soon complaining. By the time the consultant came round we had been there roughly 6 hours and were more than ready to go home. We already had a follow-up appointment booked for November but it’s been requested that that is brought forward and it is likely that they will send us to Addenbrookes Hospital where he can have an EEG. Until then, we are still really none the wiser. As of yet, they haven’t diagnosed him as being epileptic but all signs are pointing that way.
This whole new episode has put me completely on edge and I currently feel like he is a ticking time bomb waiting to go off. I don’t want to think about my sister, which sounds bad but it scares me that what happened to her is what’s happening to him and I just can’t think about that. People have told me I’ve been brave in how I’ve been handling it but I haven’t really. You just get on with it and do what you need to do. There’s no bravery involved. It’s instinct. It’s that maternal bone that kicks in and you go into auto pilot.
What to do…
I thought about sharing the video I recorded of his fit with you as it was very raw and would give you some idea but it is quite emotional and hard to watch and Liam would also prefer that I didn’t and I have to respect his choice. However, what I will do, is share with you some advice from the NHS website, along with some of my own.
First things first, if it is safe to do so, put them into the recovery position. This video from the epilepsy society will show you how…
- Move them away from anything dangerous or that could cause them an injury i.e a busy road or hot cooker.
- cushion their head if they’re on the ground
- loosen any tight clothing around their neck – such as a collar or tie, to aid breathing
- when their convulsions stop, turn them so that they’re lying on their side
- stay with them and talk to them calmly until they have recovered
- note the time the seizure starts and finishes.
- Do NOT put anything in their mouth.
Not all seizures require an ambulance, however, you should always call 999 if…
- it’s the first time someone has had a seizure
- the seizure lasts for more than five minutes
- the person doesn’t regain full consciousness or has a series of seizures without regaining consciousness
There are some regular questions we get asked whenever Dexter has had a fit previously so it is useful to try and remember as much as you can about before, during and after the seizure. Things we are asked regularly are… Has he been unwell? Has he had a temperature? How long did it last? Was there any incontinence? Was there any warning or indication? Did he go stiff or jerky or floppy? Did he change colour – go blue or pale etc? Did his breathing change? How long did he take to come round?
All of these and more are very important details. There are of course different types of seizure too and the Epilepsy society has lots of information on what to do which you can find here.
So, that is currently how it all stands. Can I please ask that if you work with Liam and you are reading this, PLEASE do not go up to him to talk about it. I may be very open and talk to you about it all in detail but if you see him at work, please let him get on with his job. While he is there he can escape it all and doesn’t need reminding of it. We know you mean well, but please, just don’t.
If you have had a child that has been diagnosed with epilepsy or even if they have just suffered their first seizure, I would love to hear from you. I’m not gunna lie, this shit is hard. Hard to watch and hard to deal with so if you have any advice or just want to chat about it, please do. Either leave me a comment, message me on any of my social media pages (buttons at the top) and/or use the contact page to drop me an email.
Wishing you all well xx