Epilepsy And Autism
I said I would write about the ‘episodes’ that J has been experiencing, so here goes….
On a Sunday evening, back in July 2017, I was sat in the lounge, watching TV. Two of the boys were in bed, and J was wandering around upstairs (it was 9pm, so it wasn’t his bedtime).
I heard a *bang* from upstairs, and as J is a fairly loud boy, with big feet, I presumed he had stamped his foot on the floor. I called up “stop banging“, and went back to watching the TV.
Within a minute or two, my ears tuned into a noise that did not ‘fit’ into the house. Gut instinct? Mother’s instinct? It just didn’t feel right.
I paused the TV, and listened intently.
I jumped up after a few seconds, and announced with a panicked voice, “something isn’t right!” and made my way to the staircase. I got half way up the stairs, and when I turned my head to the left, which meant I could see straight into the family bathroom, there on the floor was J, making these horrendous noises (I still feel sick every time I think about those noises).
His head was wedged under the bottom of the radiator, with it digging into his brow.
He was unconscious and he was making a gravelly, snorting, choking for breath noise.
999 was called, and the operator could hear the noises J was making, and was asking all the questions about his heartbeat, breathing, any obstructions in his throat, any wounds etc.
A ‘Rapid Response’ man arrived within minutes, closely followed by a twin ambulance crew, and J was finally ‘coming to’.
We got him onto his bed, and he wanted to sit up. He allowed them to put a monitor on his finger, a blood pressure cuff on his arm, and use a stethoscope on his chest.
He seemed fine, if not a little dazed.
The decision was made, after around thirty minutes of them observing him, that it would be better for him to stay at home, as it would be too stressful for him to be in a bright and noisy A&E department for hours and hours.
I was told to call 999 again if he went downhill or it happened again that night.
I checked on him every hour through the night, but somehow he managed to have another episode between these checks.
I discovered him with blood caked over his face, and dazed. I had missed the actual episode, and had discovered him after it. He had a nasty wound to the side of his tongue, where he had chewed away at it (he still has dents in that side to this day, as it healed, but not entirely).
I chose to call the NHS helpline number, and ask for their advice as to whether I should take him to hospital, a GP, or call for an ambulance – I didn’t want to waste a call to 999, and an ambulance, as I wasn’t sure if he fitted the criteria.
After going through some basic questions with me, the call handler said a doctor or nurse would call me back within an hour. The call back came within five minutes.
After retelling what had happened the night before, and what I had just discovered, they sent an ambulance out for him, and I was told he would need to go straight to hospital.
As J was still very dazed and lethargic, the actual wait in the A&E department wasn’t too stressful for him. He slept on and off, and didn’t try to escape, or make any vocal distress noises.
We were transferred to the children’s wing of the hospital, and were lucky enough to see a specialist epilepsy doctor, who worked with children and adults who also have a learning disability.
As J is so tall, the beds in the children’s department were too short for him, and he had to lie curled up in the fetal position, or else have his lower legs dangle off the end!
I retold the story again, about each incident, and described in detail what happened. At no point did J ‘jerk’ or physically move his body. He was completely unconscious, and struggled to breath.
When he was in the children’s ward, they did an ECG on his heart, and he spent his time taking the probes stuck on to his chest and legs, off. It didn’t help that they didn’t know how to get the ECG machine to work, so he was getting bored with little square sticky pads peeling up at the sides, and decided to help them fall off completely. With my help, they finally got the machine to work ( amazing what switching it off and on can do!), and I tried to keep Joseph engaged with songs and away from the sticky squares. The ECG was fine.
An appointment was made to see the specialist in his clinic, and we were sent home.
During the next week he had another episode, and I filmed it.
He was in his bed, it was around 1am, and I filmed what was happening. I did this to prove there was no physical movements and to show the way he was breathing and choking. I wanted to back up my claim that he was not just in a ‘deep sleep’ and snoring.
I tickled his feet. I patted his back. I lay right next to him, held him in the recovery position, and kept his jaw from grinding onto his tongue. If I were to even walk into his room when he’s asleep, he stirs. If I managed to make it in there at all and dared to touch his hair or his feet, he’d rapidly pull the covers over his head, or turn onto his other side. He was not just having a heavy sleep. He was experiencing something that made him lose consciousness and become dangerously at risk of choking on his own blood or tongue.
The appointment with the specialist went okay. As okay as could be, as there was nothing he could say to reassure me, or confirm any diagnosis. It was a mystery what was happening.
He wanted J to have an EEG to monitor the electrical waves in his brain.
The problem with an EEG is that the patient must lie very still for up to an hour, with probes stuck to their head. This would not work for J. Also, as the patient must be awake during this time, they cannot use any form of sedative or sleep inducer to keep the patient still.
This meant that the EEG idea was abandoned.
An MRI scan was suggested, as this could be performed under a general anesthetic.
It took 11 months for this to happen. I had to chase it with my GP, as well as the specialist, as I kept on drawing a blank with my enquiries.
During those 11 months, he had many more of these episodes. I would wake to hear that familiar and scary noise, and grab my phone (to A) time the episode and record it, and B) to be able to call 999 if needed).
I had to lay with him each time, keeping him in the recovery position, and continually checking his mouth for choking or biting his tongue. I would talk to him, and stroke his hair. I don’t know if he’s aware or can hear me, and it is frustrating enough for him that he is unable to communicate verbally in his everyday life, so to be in this state, and potentially scared witless by his body behaving this way, I want to make sure he can hear my voice and my reassurances that I am there and he is safe.
He finally had his MRI, and it was quite a stressful wait for him on the ward prior to the scan.
We had to wait five hours in a hot and stuffy ward, before he could go down to the scanning room.
I insisted he have a pre-med which would help him doze more, and the second dose worked within twenty minutes or so. It worked so well that he fell asleep on the ward, and wasn’t awake for the actual administration of the general anaesthetic, or the long walk down the corridors to the MRI unit.
He was wheeled down to the side room next to the scanner, where the anaesthetist began holding the mask over J’s face. When he told me he was ‘under’, he said to give J a kiss goodbye, and it took all my strength not to break down there and then. I managed an arm rub and blew him a kiss, as if I had have reached down to kiss him, I think I would have dissolved.
I have experienced a child having a G/A before, as W needed an MRI as well, when he was only a few months old, to rule out a brain tumour being the cause of his nystagmus.
It doesn’t get easier the second time. You have this feeling of losing control of being the carer and protector of your child, and couple that with the worry about the small risks of having a G/A and what they will find, you have to try and remain calm within yourself, and occupy your mind with a book or a walk.
We are awaiting the full results of the MRI. Initial looks by the specialist, at a scheduled appointment recently, didn’t show any obvious tumour, however the 126 images need to be looked at in depth by specialists. Our consultant has also referred us to another specialist in another hospital, as he wants a second opinion, and potentially this other specialist may have come across a case just like J’s.
For now, our specialist has said he doesn’t believe it to be epilepsy. Despite this, he talked about the drug options available, but each one comes with some quite severe side effects.
One drug has the high risk potential of making J angry and aggressive.
Another drug causes insatiable feelings of hunger and wanting to eat non-stop.
Both of these side effects would be detrimental to the measures I have in place at home.
I have locks on the ‘goodies’ draws, and also have a separate fridge and freezer in the garage, which contain the foods J would eat raw. The kitchen fridge-freezer only holds foods which J won’t touch.
I also cannot have J becoming violent or aggressive. He is so tall and well built, he would be a danger to myself and to his younger brothers, and it would make excursions out of the house a high risk.
Add to this, the specialist said that these drugs are not 100% in helping, and can take up to two years to start showing their positive effect.
I cannot do that to J. I cannot medicate him with such high risks and low rewards.
For now all I can do is monitor J every night. My ears feel like they have a radar in them now. They twitch at the slightest ‘odd’ sound in the house, and they get confused when one of the dogs snores (this dog has always been a loud snorer, but in his old age it has gotten worse), and I go into a mild, split second panic that it’s J.
I’m hoping that whatever it is, he grows out of it quickly. We’ve been lucky so far that they only happen when he’s at home, but his school (and from September, his College ) is aware of the situation, just in case.