Shuddering Episodes

That moment when you know somethings not right, when panic sets in, when you try to remain calm and do things right but inside you’re screaming ‘what’s happening?’

19th January was a normal morning, I had decided to have a quiet one, stick the tv on and just relax after a weekend working, we were both in our pyjamas and Jackson was playing with his toys when he stopped, and stood staring at me, trembling, shaking, shivering? I’m not sure how to describe it. He had done it before, but always with a huge grin on his face, almost in a ‘cheese, Gromit’ way, and we had always assumed it was excitement, though in the back of our minds it was always there it might be something more, but this time there was no happy smile, he didn’t seem to be there. I grabbed his arm and he was rigid, I started sternly telling him to stop, nothing. Eventually he seemed to release from it and a look of panic came across his face and he burst into tears. I pulled him up onto the sofa and cuddled with him, unsure what to do, wishing he could talk and tell me whether he had done that on purpose, though his face told me he had not. I didn’t want to call anyone as I wasn’t sure exactly what had happened or what to say! But sat on the sofa with me then, he did it again. This time I handled myself better and tried to keep him calm, and when he came out of it he was less stunned. I knew I had to see someone because this wasn’t normal, so I rang my GP surgery. 

After about 10 minutes on the phone waiting, with me being ‘first in the queue’ I gave up and thought I’d call 111 to see if they had any ideas or even could put my mind at rest about what it was. A friendly lady answered the phone and asked what was the matter. What was the matter? ‘I think my sons just had some kind of… Fit? Seizure? Episode? All those words were scary. I described what had happened to her and while she was reading through her script of questions he did it a couple more times. She then passed me onto a clinician for a second opinion who told me ‘I have dispatched an ambulance to you, I don’t mean to worry you and you could make your own way to A&E but if he did it in the back of the car you wouldn’t be with him and if he does it in the ambulance then a medical person can see it.’ That seemed fair enough, though terrifying, and I quickly threw some clothes on us both and packed a snack for him. 

The ambulance turned up blue lights flashing, and I explained the situation to them, they took all his obs and nothing came back abnormal. They decided he didn’t need A&E but booked him in to see the GP later that afternoon. Between a paramedic, a EMT and a junior doctor they all drew blanks on what was wrong with him. The lack of quiet sleepiness after basically ruled out epilepsy and it didn’t seem to fit any other classic symptoms, but my GP might have other ideas.

That afternoon we headed to our GP who drew the same blanks as everyone else, it didn’t seem to fit any classic fits, but worth a second opinion, she rang the on call paediatrician at the hospital who didn’t know but said to come in tomorrow so they could check him.

The next day we headed in to the rapid assessment clinic at the children’s ward, I had managed to capture a couple of snippets of video, but as the episodes weren’t very long and happen with no warning I only caught the ends of them. The paediatrician again said she wasn’t sure, and that I needed to get a better video if I could. Easier said than done when you’re on your own! She gave us a blood form and said she would book him in for an EEG to measure the electrical impulses in the brain. The blood test was awful, he didn’t seem to mind the needle, but having me and a nurse holding him still and another one taking the blood was too much and he screamed and cried, though he was fine soon after, I can’t say I was! 

I got the letter through the post for the EEG which wasn’t until 19th February, though I was working so I rang up and changed it to the 22nd. 

He was still doing it, though not as insensely as he had that first day, I had made a note of when they’d been happening and he would tend to have a few on a day and then none for a few days, but no particular patterns that I could see. 

Yesterday I got a call to book an appointment with a paediatric neurologist – a bit odd I thought and asked if he needed to have had his neurology appointment first, no she says, so we booked it in for this morning because she happened to have had a cancellation. 

We turned up at the clinic and a nurse came out to take some measurements. I stripped him down to his nappy and first she wanted his length, ‘just lay him on here with his head touching the top’. Well. He kicked off! I ended up holding his top half still while she tried to quickly unbend his leg to get some kind of measurement! Next was his head circumference. Nope! He wiggled and shook his head from side to side every time she tried, again I had to hold his head still so she could measure, all the time he was howling and probably terrifying the kids in the waiting room wondering what was going on! Last was weighing him, by this point he was in such a state that there was no way he was going to sit, he wouldn’t stand still so she had to weigh me holding him! Seriously I have no idea how measurements can be so traumatic! 

Then we were called in to see the consultant who asked ‘do you know why you’re here?’ Great. She explained she was a neurology paediatrician who specialises in epilepsy and would normally see him after the EEG, but ok we have an appointment lets go through it all again. I went through the whole story again, demonstrating the movements he does, showing her a couple of videos I’d managed to capture and she goes ‘well it’s not epilepsy.’ PHEW. This wasn’t ‘it’s not classic epilepsy’, not, ‘we need to test x, y, z’, it was NOT epilepsy. She continued to say they’re known as Shuddering Episodes and though not common they’re not uncommon either. It’s a learned behaviour that’s almost a tic. He will grow out of it, don’t worry! It is a behaviour rather than a condition so just ignore it or keep him calm when they happen and he will be fine. Well, I breathed again after holding my breath for weeks! There is something happening, but it’s not life altering, heck it’s not even a condition, it’s just a thing he does and should grow out of. 

She did offer they could still do the EEG to put my mind at rest but she seemed so sure that I decided not to put him through that for the sake of it, so that’s been cancelled and after coming home and googling it it’s spot on. There are videos of children doing exactly what he does, if only I’d known about it so I knew what to google, I could have found this and put my mind at rest. That said, a call answering clinician, a paramedic, a junior doctor, a GP, and a Paediatritican were all flummoxed so I don’t feel so bad. 

So, if your child starts impersonating Wallace (from Wallace and Gromit) have a look at Shuddering Episodes. I would still suggest seeing your GP, but it might be something a lot less scary than your first panicky thought! 

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