We had noticed these weird shudders for some time. First as a baby, when Henry was snuggling next to his twin, George. Henry's eyes would roll, his arms jerk up and he seemed to be shivering down one side. We'd pluck him out of his cot, put his toy rabbit up to his face, give him a cuddle and his shudders would seem to subside. Like you do, we tried very hard to believe there was nothing wrong.
At three, we couldn't ignore it any longer. Henry's limb jerks and eye rolls were getting more frequent, and there were other strange things too. He developed an urgent attachment to his toy rabbit. He took against a lane where the sunlight glittered through the trees, refusing to open his eyes. He was extremely accident-prone, sporting the entire range of Boots Winnie the Pooh plasters. The health visitor listened to my description of the tree business, the rabbit situation and asked about the wobbles. How many a day?
Henry was sent for an EEG - an electroencephalogram. Electrodes were pinned on his head whilst he clutched bunny and a printer churned out a zig-zag picture of his brain. The results came back showing he had a severe form of epilepsy.
Talking to other parents about their reaction when their child is diagnosed with a serious medical condition, they describe an emotional trajectory that may range from denial, to anger, despair and then acceptance, the 'Dada' theory. Apart from anger, we went through all of these. Then we got journalistic. My partner, Alex Thomson, is chief correspondent on Channel Four News, and I'm a television reporter. We opened files, got out notebooks, and insisted on a second opinion.
There was worse news. The Addenbrooke's neurologist told us Henry had a comparatively rare form of epilepsy, early onset myoclonic absence seizures. The prognosis was uncertain. The condition may be resistant to medication. He told us to go home, give Henry his drugs and look up myoclonic absence epilepsy on the internet. We went home and started the first in a long line of seizure diaries, a record of Henry's fits. We were soon into double figures. Some days we counted 20 or more "absences". Most would last just three or four seconds. Then, when Henry was ill with flu, he had his first, full-blown seizure, losing consciousness for several terrifying minutes, his small body in spasm. Henry's drug intake was edged up until he was on the maximum dose of the anticonvulsant sodium valproate.
Henry was also a very confused little boy. His body was doing things he didn't understand. His mouth got a sicky taste, and then the world went funny. "Want the world to change so Henry won't wobble," he said. The aftermath of wobbles were particularly scary. Injuries - cuts, bruises and scars.
It was after one such episode, last Christmas, that we decided there must be more than drugs to help Henry. We were coming back from a festive trip to A&E, Henry's face stitched up after another seizure and a fall. We'd stopped for mince pies in a supermarket. Henry saw a flickering light, his eyes rolled and he began crying, tearing at his plaster stitches. An elderly shopper started berating us. A tantrum! The little brat needed a good smack! My partner exchanged some brisk Anglo-Saxon.
When we got home I got on the net, this time searching for alternative therapies, trawling through the weird, the wacky, and the faintly plausible. Among them was G-Therapy, a treatment of vegetable extracts and biochemical salts, administered in pill form and apparently only available from Poona in India, and EEG neurofeedback, video games based on electroencephalograms; neuro-respiratory therapy, a course of exercises boldly promising "seizure elimination". I explored cranial osteopathy, intensive physiotherapy, and conductive education. I finally went down the food route, additive-free diets, and evening-primrose-free fish oil.
Getting out the chequebook was the best therapy I'd had in months. By the end of the evening I'd ordered a large trolley of additive-free food, and a quantity of evening primrose-free fish oil. Henry was signed up for cranial osteopathy in Cambridge, neuro-respiratory therapy in East Grinstead, conductive education in the New Forest and EEG neurofeedback in St Albans.
Drugs, though, continued to play a large part in controlling Henry's condition. An anticonvulsant called Lamotrigine was added to Henry's drug regime. At our next meeting with the neurologist we told him the cocktail of pills and syringes seemed to be reducing Henry's seizures, but he had developed a hand tremor, which it emerged might be one of the many side effects of sodium valproate. The neurologist floated a plan. Slowly reduce the dose of valproate and introduce a third drug, Clonazepam.
We were reassured that initially at least, the dose would be tiny. We duly ordered supplies and started reducing the syringes of pink medicine. Events then overtook us. Henry got flu and had another racking seizure. The advice from the hospital was to go back to the original regime.
Disappointed, we embarked on a series of alternative treatments. First we tried conductive education. It wouldn't stop Henry's seizures, but it helped him control his hand tremor, improved his balance and concentration. Next we went down to the neuro-respiratory therapy centre in East Grinstead armed with six flannels, two towels, a telly and Percy the Park-keeper. As Henry lay on a couch watching Percy, the therapists positioned our hands on rolled flannels.
The idea was to exert very gentle pressure in specific areas around Henry's diaphragm. The theory was that by helping improve Henry's respiratory system, blood flow would be restored to the brain which might encourage the development of new neural structures, and generally improve his metabolism. Neuro respiratory therapy, or NRT, is a treatment primarily aimed at children with cerebral palsy. Parents are taught the techniques, and given exercises to do at home. Apparently after around 200 hours of flannel work "abnormal bodily structures" might begin to reverse. By 1,000 hours there could be substantial changes.
After his treatment Henry farted exuberantly and slept like a log, the night-time seizures apparently reducing. There was much the same result after weekly sessions with the cranial osteopath. More expulsions of wind, more deep sleeps. Then as the summer ended, there was a turning point. We were on our way to St Albans for the EEG neurofeedback consultation. The lightning started as we turned off the motorway. Henry shielded his face with angry fists and began to recite The Wild Things as the thunder rolled. By the time we arrived Henry was inconsolable. He hadn't had a full seizure, but there was a lot of what they call "epileptic activity". He was drumming his tongue on the roof of his mouth, tears trickling from his closed eyes. Whatever the possible benefits of EEG neurofeedback, it was clear this wasn't the time.
We drove home, the sun came out and Henry started burbling about bunnies. I watched him in the mirror, happy and secure, and I saw something staring us both in the face. I was in danger of losing the plot. I'd stopped seeing Henry my son; I only saw his condition. I was terrified of his seizures. I'd researched it, been in chatrooms on the net, I'd tried to put myself in his place - dammit, one night I'd even tried his medicine. (Fleeting high, knocked out).
I should have listened. Henry had told me about the taste in his mouth before things went funny - what I now know is an epileptic "aura". He didn't like shocks, loud things, certain kinds of light. Being ill, tired or upset were all likely to trigger seizures. He couldn't be without rabbit because it meant much more than a cuddly toy. It had seen him through those early baby shudders. We couldn't avoid storms, flickering light, upset, but we could try and construct a calmer life.
Henry had his fourth birthday recently, a year since diagnosis. He's slowly reaching his developmental milestones, catching up with his brother. The seizures are much less frequent. We're keeping up with all the therapies, conductive education, NRT, the cranial osteopathy, the fish oil.
Henry has started at school - an extraordinary school, where he gets the help he needs. Our home life is less busy. So far we've managed to steer clear of bugs and colds. We try not to drive in thunderstorms. We never go down the glittery lane. But the difficulty of all this is that without reducing Henry's drugs, we don't know what's working.
This autumn we started tackling that too. We started talking cold turkey to the medics. And, funnily enough, that proved therapeutic too. Henry might be eligible for a clinical trial at Great Ormond Street hospital of the recently publicised Ketogenic diet - a high-fat, low-carb diet, which has been successful with children whose epilepsy is resistant to medication. Already underway are studies of something called Vagus nerve stimulation, a treatment that aims to prevent seizures by sending mild pulses of electrical energy to the brain via a device like a pacemaker.
For the time being though, all this is in the future. We now know many parents whose children cope with huge challenges. We know anticonvulsant medication can be a lifeline. And I'm not knocking drugs. I just want to believe there's more for families like us. Not least hope.
Like Henry, I want the world to change, I don't want him to have wobbles. I want that miracle cure. But whatever happens, Henry's Henry. Adorable. Wobbles and all.
