The problem with trying to tell the story of how your child developed epilepsy as that each of us could really write a book. I see why people write blogs. I’ll try my best to keep this as concise as possible! I’ll miss out some things and try to keep to the basic story.
David was our second child. He had an older sister who was ridiculously pretty and engaging but who seemed to be born without the need to sleep so we were in a hazy state of exhaustion most of the time. She was two and a half when David was born and by some wonderful coincidence started to sleep through the night. David was an almost caricature sweet baby. He was quiet, content, slept really well and was always so cheerful. He never seemed to cry! Honestly, on a morning we’d know he was awake because we’d hear him giggling in his cot! So we went from being a sleep deprived couple with one child to being an energetic, spoilt for sleep couple with two kids. He carried on being like that as he grew. If he ever cried we’d really panic because it had to be serious. When his younger sister was born he was protective and helpful. I’m not exaggerating he really was and is the loveliest kid.
We always tended to go to colder places on holiday. I have family in Iceland and my wife has a thing in general about Scandinavia so it was what the kids were used to. I have loads of pictures of them on the beach playing with jumpers on! Finland was always sunny though. One year we went to the Isle of Lewis in the Outer Hebrides. It is unbelievably beautiful. David was not far short of his sixth birthday and we were playing on Uig beach (the big one). My wife was dozing and I was playing cricket with the kids. Suddenly, David grabbed his right arm just above the elbow. His right hand then jerked up to his eye. He did this suddenly as though something had either hurt his arm or his eye. He then started making the most awful noise. It’s hard to describe. A bit like the sound you might make in your throat if you’re trying unsuccessfully to lift a really heavy weight but it was strangled, high pitched and sounded as if he was in terrible pain. He fell to his knees. It lasted for about 20-30 seconds. By this time I was sure he had sand in his eye and for some reason it was particulary painful. I got a water bottle and tried to wash his eye but it seemed to be alright. We were a bit shaken but he just wanted to carry on playing. Then about an hour later it happened again. We were totally baffled. The worst thing was that he seemed to be in dreadful pain. There didn’t seem anything outwardly wrong with him but it was really worrying. He was fine for the rest of the day but then it happened again when he was in bed having a story. The following morning we took him to Stornaway Hospital by which time it was happening every 40 minutes so he had a few in the hospital, which was handy. They told us it seemed to be some kind of seizure and it would be best to get him home. They gave us a letter to give to our G.P.
David was his normal bouncy self, never miserable or fed up. His sisters were worried and tearful. My wife was strong in front of the kids and a mess with me. I was just convinced he would have his arm amputated or lose his sight. I can’t tell you the fear you feel when there is something wrong with your child and the awful feeling of failure that you can’t fix it for them.
I took him to our doctor. He said he’d refer him to a pediatric neurologist, which might take a week or two. David had another seizure in the car on the way home. I didn’t go home. I drove straight to the nearest hospital and walked into pediatric out-patients! I grabbed the nearest member of staff and tried to explain and right on cue David fell to the floor having another seizure. Because of the noise he made and the fact he wet himself it was pretty dramatic and soon he was in a side room being examined by a series of pretty fascinated doctors. He stayed in hospital for about 3 weeks. He had scans, EEGs, all the usual stuff. We were warned it may be a tumour. When it was finally diagnosed as a highly unusual form of epilepsy we were so relieved that he wasn’t going to die. I actually cried my eyes out not because I was upset but because I was relieved.
He was started on medication. He has had so many different types but it was good old Tegretol Retard that worked eventually. He had several months completely seizure free. School was fine. Everything was fine. I got a new job in Singapore so we moved out there. We had a communal pool with our neighbours! Life was great. Till the seizures came back.
This time they were more obviously epileptic seizures. Not only did they come back but they were unpredictable. Sometimes tonic clonic, sometimes – in fact mostly- just the tonic without the clonic. Focal. Simple partial, complex partial. He heard noises sometimes which scared him. He injured himself on every part of his body. Worst was when he fell and had a tonic clonic on a broken plate and needed a long operation to reconnect the tendons in his arm which were sliced through. He’s had seizures on stairs, in the road, in mid-air as he’s gone to head a football. You name it.
He still was mostly the cheerful little guy he’d always been but sometimes he just lost his confidence. He never had a temper so when he just didn’t want to go out he’d sit on the stairs, lean against the wall, his face would crumple and he’d cry quietly. Some of his friends were scared away and there were a few parties he wasn’t invited to. Mostly though people were wonderful. Especially his teachers. David always loved PE and especially swimming. The school still took him swimming and one of the male PE teachers swam along next to him so he could still swim. When he was at his lowest usually some act of kindness from friends or even people we didn’t really know lifted his spirits and ours. We missed our family though and the NHS so eventually we came home even though my job prospects were patchy.
Life has been mostly centred around trying new drugs and you all know what an eternity it seems to take to come off one drug and introduce another. Again and again. He went through a dreadful time of having long auras which took the form of a feeling of intense fear. He’d sob, clutch things, break pencils, shake and it would go on for up to an hour and then he’d have a seizure and it would stop. Then it would start again! He was taken into hospital again and given high doses of something or other which did nothing but make him puke for days on end. The lowest point for him and definitely for me was during one of these auras he pleaded with me to kill him. As it always seems to go with epilepsy this period stopped as suddenly as it started and nobody knows why.
David is eleven now. After a couple of years during which his epilepsy seemed to settle down to being mostly tonic clonic and occurring maybe once every two or three days, about a year ago he entered his cluster phase. That is he’d never have one seizure he’d have a cluster, some of which didn’t respond to his emergency medication. This has been the phase of getting to know the paramedics by name. We had a few dramatic ambulance rides and two occasions when we nearly lost him. You know it’s bad when they run down the corridor with him on a trolley and don’t let you in! He was taken in for a day to see how he responded to buccal Midazolam and that luckily worked really well with just one or two exceptions. Mostly if we need the paramedics we can get it sorted at home eventually.
Earlier this year he was still on a mixture of Tegretol and Zonisamide but they introduced into the cocktail one of the new generation of drugs, Perampanel. I hardly dare talk about it in case it jinxes him but it seems to have worked. Since July this year he has had two clusters (just about 5 or 6 short seizures) and nothing else!!! He had a clear summer holiday in Finland and Sweden and swam, rowed, walked, had saunas, late nights and early mornings, which were always his worst triggers and not one seizure.
I can say that life is normal because this is our normality. I have a settled job, we had a fourth child (I know!!) and things seem good. I know the thousands of seizures he’s had and his medication have effected him. His memory is erratic, he struggles with sequences like months and days of the week, he struggles to write by hand, he used to be a good reader but now he reads a paragraph and 8 times out of 10 he has to start again. Lots of things like that. Yet he never complains, rarely feels sorry for himself and still has his sunny disposition he seemed to be born with. He loves his sport, still likes swimming if someone big is near him. I do worry about his future but what parent doesn’t and today’s been a great day so that’s a good start.