I haven’t been in the habit of referring to my family much on this blog, other than in passing. The reasons are many, varied and justified. For example it’s one thing to lay one’s own life and opinions open to scrutiny on the internet but quite another to involve loved ones in that scenario.
I am going to make a very big exception to that in this posting, and possibly over the next week in others, depending on how events develop for my younger daughter. Again the reasons are many and varied but the main one is hope. That and the fact that maybe I can share some of that hope with parents who find themselves in a similar situation.
Let me give you a bit of background:
It was early December 2005 and we had moved house a couple of weeks previously. Life was good, nary a trouble on the horizon other than being a busy family and dealing with everything that normal families have to deal with.
It was a Sunday’s events that was to turn that happy state of affairs on its head. It was 7 am – I am always first up in the house (one of the reasons for this blog is to fill the time between 5am and 7am when I’m up and about).
I was just going to make some breakfast when, for some reason I decided to check on my younger daughter, then just five years old. I went into her room to find her in bed, eyes wide open and staring but strangely flicking from side to side. I thought at first it was maybe a dream so I spoke to her, but there was no response.
I shook her gently again saying her name, but the strange eye flicking continued, as did the lack of response.
Very quickly I woke my wife and called 999. The lady at the other end of the phone told me to get my daughter on to the floor and away from any obstructions whilst we waited for an ambulance.
The ambulance duly arrived after what seemed like an age but in reality was, I suppose about ten minutes. The paramedics said they’d been delayed by the fact our house was new and they didn’t have the address on the GPS. They also said some rather uncomplimentary stuff about speed bumps as they quickly set about treating their patient.
There were injections and drips and poking and prodding and…., well to be honest it was all a blur. They very quickly decided that my daughter would have to be rushed to hospital. I was to accompany her in the back of the ambulance with my wife and other daughter following in the car.
As we progressed on the first part of the journey it was only then that I sensed that the panic that had gripped my wife and me, was not exclusive to us. The paramedics who up until then had been cool calm collected and professional were obviously tense.
“Fucking speed bumps!” shouted the driver as the saline drip and other equipment shoogled around. The other paramedic kept things steady as he looked at the various monitors which were connected up to my daughter. The speed bumps safely negotiated, the blue light went on.
Thankfully, being a Sunday morning, roads were quiet. When we did encounter traffic and traffic lights the siren went on and the foot went down. I don’t know what speed we were doing but it was fast. My wife did her best to keep up in the following car.
About five miles from the hospital, the monitors changed. Don’t ask me if they went haywire or still because I don’t know. All I remember was the hitherto cool, calm but tense paramedic in the back shouting stuff to the driver, and him shouting stuff back and the ambulance gaining even more speed.
“What’s wrong?” I think I said. It may in fact have only been a look but the paramedic replied “She’s very poorly – I’m doing all I can!”
“I’m doing all I can?” I thought “Shit!” that’s only one step away from “I did all I could!”
We got to the hospital after what seemed like a very long 22 mile journey despite it being probably the fastest I have covered that ground in any vehicle. My daughter was whisked immediately to a treatment room. She was unconscious and whiter than a sheet.
Over the following few hours we watched quietly and nervously as a nurse cared for my daughter. He was looking at books at various stages. I noticed one page about meningitis. “Is that what it is?” I said.
“We don’t know yet” replied the nurse – a man called Frank – but this was no time to stereotype.
By 1pm and with grandparents present she still hadn’t regained consciousness. Nurses and doctors were speaking in hushed tones.
No-one else present was speaking at all, just staring at a wee girl and willing her to make some sort of movement or sound.
At 2pm I heard it.
“Ow!” she said. “Did you hear that?” She said “ow!” “Definitely! she always says it when something is sore! She said ow!”
“Are you sure?” said the nurse “I didn’t hear anything” but with that she said it again, only louder this time and her eyes opened slightly. After seven hours she was starting to regain consciousness.
By five o’clock she was taking some toast and a drink.
I was ready for a drink all right.
After a few days in hospital and with our daughter gradually returning to her normal self, we felt a great sense of relief. No explanation had yet been offered but there were vague suggestions of infant febrile convulsion.
Everything gradually returned to normal until one day in April 2006 when the school phoned. My daughter had collapsed in the playground. She had regained consciousness but had hurt her face and didn’t seem 100% “with it”. Another trip in the ambulance, and more tests.
There were more incidents, more hospital visits and more ambulance dashes over the ensuing months. Nothing quite so traumatic as that first time but traumatic nonetheless.
After the third or fourth event we were attending an appointment with the paediatric neurologist who dropped the bombshell. The results of initial tests had confirmed what they had suspected and that was that my daughter had epilepsy.
Epilepsy! the word echoed and echoed in my head. No surely there was some mistake, febrile convulsion they’d said – maybe it could just have been that eh? surely………..I mean she’s a normal healthy wee girl, isn’t epilepsy generally associated with kids with other medical problems? developmental delay? that kind of thing?
I may just have been thinking the above or I may have said it out loud- I can’t remember. The neurologist explained that she was confident that medication would control the seizures. The prognosis on that front was good – seventy percent of sufferers have their symptoms and seizures controlled completely by medicine.
We drove home from the appointment not saying much. Obviously my wife and I didn’t want to discuss things in front of the kids but we were probably thinking the same thing.
Epilepsy! that condition surrounded by ignorance, prejudice, stigma and discrimination. That condition characterised by superstition, suspicion, myth and biblical mystery.
I already had very direct experience of the condition which I’m not going into here other than to say that it had already had a very profound effect on my life through my late father.
However on checking various books and googling it was clear that there were very many different diagnoses of epilepsy and many different types of seizure. There was a whole gamut of drugs (with attendant side effects), alternative therapies and surgical processes which could alleviate symptoms.
There was however no exact science.
It was a condition, or number of conditions which seemed to affect each individual in different ways.
It was the start of a long frustrating journey.
To follow soon: Drugs don’t work
Filed under: Medical | Tagged: epilepsy, great ormond street hospital, seizures | 1 Comment »