Jack's seizures - how they began

I have a book where I have to record all of Jack's seizures.  It's not a medical book, it's just a normal kids notebook. The one on the go right now is a Toy Story 3 one.

I was flicking through it and just out of curiosity, I counted how many seizures he had in an average month.  The total was 170.  Times that by 12 and Jack had, on average, 2040 seizures in 2010.  Bloody hell that is a hell of a lot when you put it like that.

It used to be so much worse though.  Jack only started having seizures a month before his 5th birthday.  I remember the date: 6th February 2003.  I'd never seen a seizure before but I knew that he was having something weird but wasn't sure as he was being held up by the wall which he had fallen against. When I knelt down to see what he was doing, his eyes were rolled back in his head and as I pulled him towards me, he just slid to the floor.  I was in total shock because he was like a rag doll when I picked him up and tried to bring him round.  It was over within 2 or 3 minutes and then he slept.  I phoned my mum in a right state but her work number was engaged so I then called Granny Mac and asked her to come now! 

Then I phoned my local A & E, told them what had happened and they told me to bring him up straight away. So I was running about like a headless chicken when Granny Mac appeared and we took off up to the hospital.  They admitted him straight away and monitored him overnight.  They decided it was a one off and perhaps caused by a temperature although he didn't show signs of one.  I was starting to relax a bit but then 5 days later he had another one.  Another trip to A & E, overnight stay and home with epilepsy medication, Epilim.

The medication tasted awful and I really really struggled to get him to take it and he would just spit it out again. It wasn't working anyway because by the end of February he was having up to 30 a week.  They were mostly drop attacks, which were awful because he would just fall forwards, back or to the side as if he had been poleaxed!  He was covered in bruises, often bit through his tongue and there would be blood everywhere.  It was horrendous to watch and my stress levels were through the roof.

My mum suggested that I take Holly away for a break as she could see long before I could that this was going to be a long term problem.  So in March I took Holly away to Portugal for a week during the Easter holidays while both grandparents shared the care of Jack.

We arrived back on a Friday night to find the heating had packed in, so Granny Mac kept Jack til the next morning so that I had time to warm the house after the plumber had been. During the night he started fitting ever hour and he was looking pretty exhausted when I picked him up.  He continued to fit throughout the day and it just didn't seem to be stopping so I popped round to my mum and dad's for comfort and advice.

By the time I left there, I decided to phone the hospital and their advice was: we'll be guided by you, if you think he is bad enough to come in then bring him in but it might settle down!  Feeling I was making a mountain out of a molehill, I just kept him at home.  The seizures stopped around 10pm that night.

Next morning, a Sunday, we went for a walk in the woods with my friend and her kids.  Arriving back at the house, I left Holly and Jack playing in the garden, telling Holly to watch her brother while I made lunch.  I was half way through making sandwiches when I became aware how quiet it was outside, so I took a look and there was Jack, lying unconscious on the concrete. I yelled for Holly, scooped him up and brought him into the living room and popped him on the sofa where he started to come around.  My heart was in my mouth as I ran my hands over his head and body checking for injuries but I couldn't find any.  He then tried to get up, staggered round the room then took another fit and this time it was a full blown, grand mal seizure and he went purple cos he couldn't breathe.

Holly was screaming and backing up the sofa while I am trying to massage his chest and keep calm at the same time.  I calmly turned to Holly and told her to get mummy the phone, dialled 999 and was being talked through CPR while the ambulance was whizzing it's way to us.

By the end of that day, Jack had well over a hundred seizures and he and I were completely exhausted.  He was on a diazepam drip for 19 days but every time they tried to take him off the seizures would start again.  I demanded a second opinion and Jack and I were taken by helicopter to the Children's Hospital in Edinburgh.  We were there for about 8 days and they changed his meds to tablet form so that I could crush it into his food and he was tolerating that much better.

The next three years were spent in and out of hospital.  He has had many an ambulance ride and was 999'd from school and home, three times in one week! We've spent time in every major Children's Hospital in Scotland at some time or another.

Eventually we got some kind of control and we went from 40 - 100 seizures a day to 20.  Then he had his VNS fitted and now he has between 4 and 10 a day.  Still not great but far far better than before.
Jack has come a long way but now he has to get through puberty, which can be pretty nasty for seizures because of all the hormone changes but I am hoping it is not as bad as it was in the beginning or at least not any worse.

On the left is the VNS implanted and on the right is the gismo they use to configure it......cool huh?