Epilepsy – The first fit

July 20, 2016

It was almost 3 weeks ago now, something happened that made Liam and I switch roles. Liam went in to blind panic mode and I stayed calm as he witnessed something I’d seen many times before. That evening our beautiful boy had a fit.

It was a normal Friday summer evening, we’d had our dinner and fancied a walk so we put Paisley in her buggy and got Dexter’s shiny new bike out and set off to wander around our local area. We hadn’t been out long when Liam’s sister drove passed us. She stopped to say hello and we decided to follow her back to her house.IMG_3403

Once we were there, Dexter sat on the floor on his own, just happily playing with the trains while Paisley fed and the adults gossiped.

He lay on the floor as kids often do and then arched his head backwards as though he was trying to look at the cat but then he started twitching. We called out to him but he didn’t respond. At first I thought he was just playing. You know, just not answering us because he was being cheeky but we all got down to the floor and quickly realised that he was not messing about.

This is not a drill! Repeat, this is not a drill!

Liam got his phone out and turned the torch on. He shined it in Dexter’s eyes. His pupils weren’t dilating. His hands, feet and eyebrows were twitching and shaking. I called 999 while Liam continued to call out to him and bring him round.

I saw a side of Liam I’ve never seen before. My heart broke for him a little as I saw the fear in his eyes. What was happening to our boy? To Liam’s boy? He just kept repeating “this isn’t right” and talking to Dexter asking him if he could hear, begging him to respond. I advised the 999 crew of what was happening and they were there in minutes. An ambulance and a first response car. The crew were amazing and Dexter was still fitting when they arrived so they got to see the end of it too. They did a heel prick test to check his blood sugar levels, shone a light in his eyes and checked his temperature. Everything was normal. I remember trying to reassure Liam. I’m not sure how. I just seemed to be on autopilot. At this point Dexter had stopped fitting but was now extremely fidgety. The crew had labelled him with little monitoring points connected to a portable machine and he was trying to pull them off. He also had on an oxygen mask which he didn’t take too kindly too.

We’d established at this point he was definitely going to hospital so we decided that I would go in the ambulance with him and Liam would follow behind with Paisley as I can’t drive and we’d need a car there to get home. Liam ran home to get the car,  Paisleys car seat and Dexters red book and was back in minutes. I was strapped into the ambulance and held Dexter on my lap. It was hard work holding him. Even though he wasn’t with it, he was still trying to pull his oxygen mask off and grab at all the wires and tubes and buttons all over the ambulance. He was totally not himself. Extremely restless. We got to the hospital really quickly as you’d expect and we were taken to through corridors and double doors after double doors. Liam parked up and came to find us. Once we were there and waiting for the crew to hand us over Dexter started to come back round. Not completely but at least he was looking at us when we said his name and when Liam found us with Paisley he managed a smile for his baby sister.

We were there for hours. Repeating answers to the same questions asked by different people. “What was he doing when it happened? How long did it last? Etc” They monitored his pulse through a clip on his finger. One of those ones that light up red when it’s attached.  He wasn’t impressed by all the tests so we jokingly told him his batteries had run low so he needed charging. They used a stethoscope so we pointed out to him that it was like what Aunty ‘Liver’ (Olivia) has. He still wasn’t impressed. After what seemed like forever, the paediatrician called the specialist to discuss the next step. The specialist advised to do another set of observations and if all is well, we could go home however we were to call our GP and get them to refer Dexter to a neurologist. And that is what we did. IMG_2559

Monday couldn’t come quickly enough. I just wanted to get the ball rolling. I called the surgery that morning and they got us in that afternoon. When we saw the GP she checked him over again, repeated all the observations they did at the hospital and booked in the referral. A couple of days or so later we had another scare. Dexter woke up at around midnight absolutely sweating, coughing and hysterical. He didn’t have a fit but he wouldn’t calm down and after the fit he’d had we didn’t want to take any chances so we drove him straight to A&E. Of course as soon as we were there he seemed to settle relatively quickly and just wanted to go home but the hospital staff insisted that we wait a while so that they could keep an eye on him. They monitored him a few times and again, discharged him and all was fine.

That was until last Wednesday night/Thursday morning. We were all in bed, Dexter was with us and we were asleep. Then Liam jumped up and shouted ‘he’s doing it again’. I don’t know how it woke Liam but I’m glad it did. I can’t wake Liam up at the best of times but Dexter managed it with no problem. The fit was the same. His eyes were twitching, as were his hands and feet. He wasn’t responding to us calling him or talking to him and his pupils didn’t react to any light changes. I called 111 and talked them through it as it was happening. They said they were dispatching an ambulance so we got a bag ready of nappies for Paisley, Dexters red book and a few other things we thought we might need. We all moved downstairs, got our shoes on, got both kids sorted and waited… and we waited…

Now I don’t ever want to slate the NHS, it’s a wonderful thing and we are lucky to have it but it’s run by humans.. and sometimes humans make errors. I know that when an ambulance takes someone to hospital, they have to wait and hand over that patient before they can go back out. If they A&E department is very busy, they may have to wait to hand over and obviously, this can cause delays in getting the crew back out so I gave them the benefit of the doubt while we waited. By this point, Dexter was conscious and responding and very tired so he slept in Liam’s arms and he was safe so if someone needed an ambulance more urgently than us, I was fine with that. However, after waiting an hour, I began to wonder where it was so I called them again… A few minutes later, a paramedic turned up. When he asked what time it all happened he seemed confused and asked why we had only just called an ambulance. He was shocked to hear that we had actually called over an hour ago and he had been sat round the corner waiting for a next call. Somewhere down the line, our call never got to him. Luckily as I said, Dexter was safe but I can’t help but wonder what if…. What if this isn’t the first time thats happened, what if someone else was a lot more desperate than we were.

Anyway, I digress. The medic checked Dexter over. Of course we had to wake him which he didn’t like. You could see our poor boy just wanted to sleep. He didn’t remember what had just happened. He didn’t want a stethoscope on him. He certainly didn’t want to be pricked so they could test his blood sugar levels. The medic talk with us a lot, asking about his last fit, asking about epilepsy in the family (which there is a fair bit of) and various other things. He was a lovely man and as he spoke he was paying attention to all of Dexters reactions and taking note of it all. He was very thorough. We even put Paw Patrol on the TV so that he could see how Dexter normally is in comparison. He asked us if we wanted to take him to A&E, saying that there was no right or wrong answer. We decided not to this time round. We had already put Dexter through that twice and it’s not at all nice for a 3 year old to be prodded and poked and pulled about when all he wants to do is sleep. We agreed that if he had another fit that night we would definitely be going in. So we thanked the paramedic and we took Dexter back up to bed. Both Liam and I sat and and watched him sleep for a while, just to make sure that he was ok. We didn’t want to sleep until we were certain. But we slept eventually.

And that brings us to now. Dexter has his neurology appointment today. We have no idea what to expect. They haven’t given us any idea what they will do at this appointment so we are totally not prepared. I do strongly suspect that it is epilepsy and that is what they will tell us but I would really like to be wrong. Epilepsy is what killed my sister and if I am completely honest, I am terrified of that happening to Dexter. I tell myself it wont. He’s young. He’ll grown out of it, children often do.. but nobody can ever be certain. If we could predict things like that, then maybe Kay would still be with us.

A lot of my friends have sent loving messages, words of comfort and so on and I am so grateful to know that they are thinking of us but I hope everyone understands that I might not want to message back straight away.
I’m going to leave this post here and I hope to update you all after his appointment. Normally I would ask if any of you, my readers have experienced anything like this but please forgive me if I don’t this time. I’m not sure I want to know. I just wanted to write and get it out. Thank you.IMG_20160523_195757

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  • Reply Sarah Howe July 20, 2016 at 3:27 pm

    Oh lovely, how scary for you all. I’m glad you managed to stay so calm and rationale throughout this but inside you must be screaming. I really hope if it is epilepsy, he will grow out of it. I’m so sorry to read about your sister – I did not know this. Just think we are all so different and no illness treats people the same way. Wishing you lots of luck for the results! Thanks for sharing your brave story with #bestandworst x

    • Reply Leslie Rickerby July 20, 2016 at 6:44 pm

      Thank you Sarah. They basically said thats probably what it is but don’t want to just assume and then medicate if it isn’t so they’ve asked us to video his next fit so that they can asses it. They’ve also got him booked in for an ECG on Friday afternoon. One of those things I guess.

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