Joshua had a stroke at birth and as a result suffered ‘devastating brain damage’. When we finally got home from Special Care, our GP came to visit us at home to hear all about our experience. He said then that Joshua would be likely to develop epilepsy, as he grew older and that is the fist time that we heard that word in relation to our precious son.
I then put it to the back of my mind and focused on raising our baby. But when he was about one year old, we noticed that his right arm would randomly begin twitching – in fact I have been watching home videos recently with the benefit of hindsight, and I often spot his twitching arm and his somewhat dazed expression. We reported this twitching and in response, he had his first EEG and we were told that it showed that he was experiencing epileptic activity.
They were manageable at this level but by the time he was 4 years old, we needed a Children’s Epilepsy Nurse and he started to try the vast gambit of anti-epileptic drugs, with no real success. We were told that there are many drugs available but also that statistically, if the first four that are tried do not work, we are unlikely to find one that will.
However, each of the drugs had their own special side effects which we had to juggle too: they all seemed to make him drowsier, as they are working to calm the brain, that makes sense. But one made him very angry and agitated, he had tantrums that we had never seen before, throwing things at the walls and hitting and kicking. We used to have to take him out for walks on the beach to burn his anger out. Another one was like a light was switched on, for the first 2 weeks, Joshua began speaking more and was so alert, but then he regressed again. But it cruelly gave us a glimpse of the boy we could have without seizures and drugs. There was another drug that his consultant was considering that could result in permanent damage to his vision, so we rejected that possibility.
When we had pretty much exhausted the anti- epileptic drugs, we began to research alternative treatments. When Joshua was 9 years old, we tried the ketogenic diet, which is an extreme and precise version of the Atkins diet, full of fat and protein, but no carbohydrates. We stuck to it for 6 months but with no success and it was making both Joshua and me, as the chef, miserable. It would have been worth the trauma in the kitchen if it had been successful, but Joshua never became ketotic.
Next, we considered brain surgery, a hemispherectomy, where they separate parts of the brain to prevent epileptic charges from spreading. This was a big decision and one where initially my husband and I did not agree, but in the end, we decided to go ahead at Great Ormond Street Hospital as the odds that we were given for success were so tempting. So, on the day before his 13th birthday, Joshua underwent brain surgery, while we paced around London trying to pass the time, until it would all be over. The odds were good that the surgery could make him seizure-free and I am aware of many children who have had that happy outcome. But this was not the case for Joshua: his seizures are vastly reduced, compared to what they once were, but they do still happen on a weekly basis and his mobility has been severely impaired by the procedure too.
So, we are managing at our current seizure level, with weekly clusters typically, and bi-monthly intervention requiring his emergency medication, Buccal Midazolam. There are two more potential treatments that we are yet to try, if we consider them to be worthwhile: Vagus Nerve Stimulation (VNS) and cannabis for the treatment of epilepsy. I am yet to be convinced that either would help Joshua and we are coping with his seizure activity as it is presently.
When Joshua was first diagnosed, when he was born, we thought his main issues would be his learning difficulties and mobility, as the doctor warned us that he might not ‘see, hear, walk or talk’. However, he has defied their prediction and he can see, hear, walk – albeit not very far and with a limp – and talk – albeit with a limited vocabulary. However, his epilepsy has been in the background to all of those other issues and at its worst, it has been his main problem. It is his epilepsy that is life-threatening and it is his epilepsy that can, more often than anything else, often spoil his fun and our plans.
There are key triggers that are more likely to result in seizures and for Joshua the main ones are :
- Extreme temperatures, if he gets too hot or too cold
- Over-tiredness from physical exertion
- Over -excitement. This is the cruelest trigger of all, as Joshua can be delighted, having a great time and then suddenly, bang, he is in the grips of seizures
One of the toughest things about epilepsy is its unpredictability. We can try our best to manage these triggers and pre-empt their effect, but that is not foolproof and they still manage to catch us out even after 17 years of this. We have learned to be flexible, to be prepared to change our plans at the last minute, in the event of seizures and their after-effects.
Joshua’s seizures often happen at the least convenient moments or places: on a dog walk, by the river bank, about a mile from the car for instance. I had to wait with him lying on my coat while my husband ran back to the car to get a wheelchair. In the bath or swimming pool, with the added risk of drowning. At a Bruce Springsteen concert, so we had to leave the long-awaited show early, or just before going out for a meal with friends so that we had to cancel. There are numerous examples in our lives when epilepsy has got in the way of living. He had a spell at school when his seizures would appear at 3pm, just as the end of the school day. I would get a call to ask me to drive through to collect him rather than putting him in his taxi home. This seemed to happen day after day for a while, as though on some level, he could control the timing and he wanted to see me earlier than planned. Fortunately, I had a flexible employer who tolerated these dashes out of the office at 3pm.
Just last night, at 9pm, Joshua was having his Weetabix supper, when he began to fit. He was seated so he was not in any danger. But it went on longer than it should so I had to administer his rescue medication. After what seemed to be an eternity, the seizures stopped and he became drowsy. I wanted to keep him within sight so I lay him down on the settee and tucked him in under a blanket. He briefly dozed but we all three of us went to bed at the same time. But I was not in bed for long as he was restless, jumping out of his bed and into mine, then minutes later, vice versa. After several bed swaps, he insisted on going downstairs where he had more cereal in case he was hungry. But at 4am, he began fitting again. He must have known that it was coming and did not want to be alone. Again, as it was 7 hours after his initial dose, I gave him another dose of Midazolam. I waited for it to take effect and then we both went back to my bed and slept from 5am. So, disturbed sleep has been another downside of Joshua’s epilepsy.
As Joshua grew, and he is now around 5 foot 11, the space that Joshua needs around him to be safe, if he should fall, has increased. When he was younger, he would fly backwards with the power of the seizure, as though somebody had shoved him. If there was a hard surface around, then he was magnetically drawn to it with his head – our brick hearth, a porcelain public toilet , a wooden window frame all took their toll on his poor head over the years. Nowadays they are less dramatic than that; he tends to be sitting down for them and they are more like shrugs , with less power somehow. He used to wear a helmet at school and respite for his head protection, but since lockdown at home, he has hardly worn it and come to no harm. He really hates wearing it and is constantly tugging at the chin strap to try to get it off.
Fortunately, we have not had too many hospital admissions due to epilepsy over the years, although there have been a fair few trips to Minor Injuries with bleeding cuts. His first major scare like that was when he was 9, when we were on holiday in the dales and the emergency medication did not stop his seizures as it should. We had to call 999, and due to the rural location, we were taken by air ambulance to hospital where they tried several drugs to try to stop his seizures, with eventual success. We had to stay in hospital for several days and as soon as the drugs wore off, he began fitting again. We have had several ambulance trips to A&E over the years when his seizures have been prolonged, many called by cautious school rather than us, but mostly, thankfully, they have not required overnight stays and mostly just observation rather than intervention.
We, like many people, were not aware of the complexity of epilepsy before we had Joshua and his diagnosis. My only prior experience was a fellow pupil at school having a full blown tonic clonic seizure in the PE changing rooms when I was at high school. Most of us only think of the twitching sufferer on the floor when we think of epilepsy but the types of seizure are much more varied than that.
Public ignorance means that, more often than I would like to recall, while I have been sitting on the ground or floor of a shop, cradling Joshua while the seizure takes its course, members of the public have stepped over us or walked around us without any acknowledgement. While the minority offer assistance, which usually I do not require, it is always heart warming when a stranger offers help, even if it just company.
I can recall one incident after a beach walk, when Joshua and I were alone and on our way to the public toilets, when Joshua started fitting. I lay him down on the pavement, so that he was more comfortable and there was no risk of him falling down. A young couple appeared to offer help and stayed with me while the seizure took its course. As it turned out, they had empathy with my situation, because he suffered with night-seizures. We had quite a chat about how he feels during and after his seizures, as I am always curious given that Joshua cannot tell me. Eventually Joshua recovered enough and they helped me get him into the car as my natural instinct is always to get him home to comfort and safety. Their presence there, although they did not offer any practical help, was invaluable to me and I learnt more too.
So I would advise anyone if you see an epileptic when you are out and about, that you offer your help, even if they do not need any, they will appreciate the offer and being acknowledged, as there is nothing worse than feeling invisible when you are that vulnerable.
During Joshua’s 21 years, we have had quite a journey with epilepsy and it has become clear that it is something that we will all have to live with, for all of his life and something that we are still learning to manage as it throws new challenges our way.