Purple Rain

There has been a run of international condition days but yesterday was Purple Day , which is an international effort dedicated to increasing awareness about epilepsy worldwide. I was surprised when looking at Facebook at lunchtime, when a photograph of him and I leapt out at me ,as a link shared by Cerebra, the charity for brain injured children. I have written them some articles about our transition to adulthood and provided some photographs to illustrate them and they were obviously recycling old material that had epilepsy in its theme.

When we were given Joshua’s diagnosis, we thought that it was his hemiplegia or cerebral palsy that would be most challenging to deal with as he grew up from a 4 day old baby. It was the GP who did a home visit , once we were home from Special Care, who first suggested that he would probably develop epilepsy , but we put it to the back of our minds at the time and focussed on helping him to get stronger. But his first seizure was when he was exactly 8 months old on Bonfire Night 2001. We had taken him out to a local bonfire, all wrapped up against the cold, and when we got home, back into the warm, he began to fit and we did not know what was happening. Temperature- related seizures in babies are common and so we dismissed it  as  a one-off febrile convulsion.

During the following summer, we noticed that Joshua’s right arm was often doing an involuntary twitch, which we videoed and queried with his consultant. He referred him for an EEG and the results were conclusive, the twitching was caused by ” epileptic charges” in his brain and we were to watch him and report back when and if it got more violent or more frequent. By the time he was 4 years old, his seizures had become bad enough to seek medication to try to control them and we first met the Children’s Epilepsy Nurse who made a home visit to let us know what we could expect.

So this nurse has been in our lives for the last 14 years. We have not had so many more home visits in that time but she is always at the end of the phone or email if I have any problems. During bad periods of clusters of seizures , we have relied upon her good advice on measures to take to try to re-gain control of his brain activity. Latterly I have tended to only need her to finalise Joshua’s Epilepsy Care Plans for school and respite, but it is reassuring to know that she is there when we need her. She was instrumental in helping us transfer from his first Special School, which had no school nurse, to his current one, even though it involved a tribunal.

Epilepsy dominated our lives from 2009 until 2016, when his seizures were out of control so we had frequent hospital admissions, 999 calls and ambulance dashes, including one air ambulance. We had reached the end of the line with anti epileptic drugs as we were told that once two had failed to take control, any other medication was unlikely to have an impact. So we invested in an alternative approach of the Ketogenic diet for 6 months, with no effect , other than making both Joshua and I miserable with the high fat, strict diet. In 2014, we made the most difficult decision of our lives and we took Joshua to  Great Ormond Street hospital for a hemispherectomy, which is brain surgery to separate the two halves of his brain to prevent the spread of seizure activity. We had been given really high odds that he would become seizure -free, but sadly that did not happen,although their frequency certainly reduced. For the first time in years, Joshua could enjoy a whole week to ten days without any full tonic clonic seizures. Post-surgery we had  two very difficult years when, after a seizure, he would be unable to sleep for 48 hours; he would be physically shattered but his brain activity would not allow him to rest. That was another challenging time in his life to manage as he would wander around in a trance, so he needed to be supervised constantly for 48 hours, so the whole family was sleep-deprived and really struggling to cope.

Fortunately, around two years ago he was given a new type of drug to try, that he takes at bedtime and that, with the addition of melatonin, brought that nightmare of sleeplessness under control. I am pleased to report that currently Joshua sleeps the best that he has ever done in his life and while they are still present in his life, his clusters of seizures are better controlled and we only need to use his emergency medication once a month on average. He will have spikes of seizures when he is unwell or perhaps over-excited, but he has plenty of seizure-free days too ,for which I am always grateful, as he never had those days pre-surgery.

So our journey with epilepsy has been a difficult one, and its shadow is always lurking around the corner, but we try our best not to let it rule our lives. I am not willing to wrap him in cotton wool and stay at home, keeping him safe while waiting for seizures to attack. We have found a way to manage a busy life, always on red alert, but never allowing epilepsy to spoil our fun.

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Electrical Storm

Some days, the threat of seizures hangs around Joshua like a bad smell all day and so you are on edge, just waiting for them to land properly. He came downstairs at 6.30 and he had a series of small seizures after breakfast, but they stopped on their own, without any intervention. They felt like warning seizures,as though they were building up to the main event and so I watched him like a hawk until he left for school. As often happens after seizures, he became loud and giddy, which can be another warning sign. We were both watching out of the kitchen window for the taxi to arrive, as the dogs barking had given us a false alarm while he was getting his boots on. As soon as he saw the taxi, I was gathering his belongings together, when he ran to the door, opened it and ran to the taxi. Normally I lead the way, holding his hand so this was quite an enthusiastic departure for him.

I warned the escort and taxi driver about what had happened already and what he might be building up to. I expected a call from school all day but , thankfully, it never came. I met him after school, as Yorkshire Grandma is on holiday this week, and the news was that he had been ” a monkey ” all day. The diary reported that he had done some dozing in the afternoon, and when he had woken, he had lashed out for no apparent reason. I suspect that his mind was confused with electrical activity. When he got home, he rushed into his den, once his helmet and boots were removed and we had enjoyed a hug, and he curled up on the settee. Joshua clearly still did not feel right and so I allowed him to rest some more before serving up his meal. After around 45 minutes, he came looking for me and his food, unhooking his pinny off the back of the kitchen door, indicating that he was ready now. Sure enough he ate everything that he was offered.

Poor Joshua, I think this black threat of epilepsy had followed him around all day and into the evening and it had still not delivered its blow by bedtime. I took his baby monitor to bed with me but as far as I am aware, no big seizures have yet arrived. Hopefully with a decent night’s sleep, his brain will re-set, giving him more peace today, as that state of red alert, having an electrical storm in your brain, must be exhausting.

This is what it feels like…

I would like to give you some insight into what it is like to live with someone with epilepsy, as it might not be a familiar experience to everyone. So, we are on holiday, Joshua has woken up happy and we have pottered about the house until late morning, enjoying a leisurely bath and getting re-acquainted with everything. We go out for a beach walk with the three dogs, and Joshua delights in throwing stones into the sea, then walking along the wet sand, helping me to push his wheelchair. We stop for lunch at a restaurant and its sunny enough to sit outside, with the dogs tied up next to us, and Joshua drinks his orange juice and devours his scampi and chips. The day has been perfect so far and we walk back to the house, where my husband lights a fire to keep us cosy, as we snuggle up together on the settee.

Joshua and I are enjoying a siesta together when suddenly, without any warning, I feel his body tense up next to me. I wake up from my doze with a jolt and he is mid-seizure – his face is contorted and his arms and legs are straight. His socks have come off so I can see every toe bend out of shape. I rub his back and try to reassure him, telling him that he is not alone and that it will all be over soon. His poor body relaxes, just for a moment, then another wave comes and he has gone again – his eyes disappearing upwards in their sockets and his mouth gurgling with a terrible sound. For the next five minutes, he goes and out of these seizures and rather than slowing down, they seem to get shorter but more frequent. Joshua’s face flushes as he gets hotter and  he looks exhausted, in between the seizures, worn out by their violent impact on his body.

These seizures are not going to stop on their own, as they are still coming quickly after five minutes and so my husband fetches his changing bag that contains the rescue medication. I wave the syringe in front of Joshua, warning him of what has to happen next unless he can re-gain some control. But several rapidly follow each other and so, I have no choice but to administer Midazolam. It goes into the jaw cavity , where blood circulation is good. Initially, it would take instant effect, but these days it can be up to another ten minutes before the seizures release their hold on our son.  That wait for effect seems forever as, if it does not work, then it is necessary to call for an ambulance as we are not able to give a second dose, due to the risk that Joshua’s breathing may be compromised ,so he needs to be somewhere with oxygen and with monitors.

Thankfully, after an agonising few minutes, the seizures start to slow down, there are longer gaps between them, and eventually they stop all together. Joshua now looks not flushed, but deathly white, but with dark rings under his eyes, and he is exhausted by the whole episode. He stares around, looking dazed and then he curls up on the settee and he goes into a deep sleep for around an hour. Our happy, lively son has been attacked by epilepsy, once again, and leaves him battered and bruised by the battle. We know that this is not a one off, we know that he will have many more battles just like this one and they can strike at any moment, when you least expect them and often at that least convenient. Most cruelly, they can strike when he is excited, as well as when he is unwell or over-tired. They rob Joshua of his sunny personality and they suspend time while they are happening.

Joshua has suffered from seizures all of his life, but has been on anti-epileptics for 14 years now, so you would think that we were all used to them by now, but each episode is still frightening for all three of us. We know the routine, so onlookers will often comment on how calmly we respond, but believe me, that is all an act for Joshua’s benefit. He needs to know that he is in safe hands and I do not want to pass on my fear to him, so I play it cool, even though inside I feel sick. I too am exhausted once Joshua finally gives into sleep, but I am then on guard for a repeat performance, so I cannot simply resume my siesta – that moment has gone.

Demon Epilepsy

Joshua is still in the throes of unusual seizure activity and I am blaming his chest infection still – we go for a blood test on Tuesday to see if he needs another course of anti biotics to clear it once and for all. But he underwent more seizures than usual yesterday : he almost needed emergency medication while we were in the car , on the motorway, as his cluster lasted for what seemed like an eternity before it ended. He looked so pale and worn out by it all that we would have done anything to cheer him up again, so of course as we approached Donalds, once again we used it as the test of recovery : we pulled into the car park, not knowing if he was truly back with us or not, until he shouted out “Robbie” another of his favourite things! I reminded him of the word that his exhausted brain was searching for and then there was no stopping him as we entered “Donalds”! He ate his chicken selects, fries and orange juice greedily as he came back to us and then we carried on with our journey.

Later in the afternoon, Joshua and I had enjoyed a nap together on the settee and then I had wriggled out to go upstairs to make the beds, leaving him dozing. I had made one bed and was on the second when my husband shouted me from downstairs. It looked as though Joshua had woken and perhaps tried to follow me upstairs when another seizure had struck. He was lying in the hall, fitting, in an awkward position and looked as though he might have hurt himself on the doorway but we could not move him until the seizure was over. My husband lifted him onto his wobbly feet and I supported him as we shuffled back into the lounge. Once he was comfortable on the settee, the cluster continued, out of control and so it was time to intervene and give him his rescue medication. I cuddled him and almost immediately I could feel his body relax and the seizures to subside. He slept for over an hour then but when he awoke he was very unsteady on his feet and only then could we properly check him over for any damage from his fall. He had some red marks on his shoulder, but other than that, seemed to have come off remarkably unscathed.

He was not safe to be left wandering around the house as he was so unsteady and I did not  expect him to eat his proper tea, so he ate two blood oranges and a tin of rice pudding for his supper, which he enjoyed. he had several attempts at bedtime, with Ruby our cocker spaniel on duty, when she came running downstairs, we knew that he had opened the bedroom door. In the end, he only drifted off once I stayed with him and then I sneaked out once he was snoring, catching 40 winks myself while I was there.

So epilepsy, once again, dominated Joshua’s Saturday, but thankfully we managed it ourselves this time and stayed away from A&E, let’s see what today brings……

Deja Vu

I am out of practice at being up at this end of the morning. Joshua was brewing a seizure all evening: I got home at 6.30 to be greeted by Yorkshire Grandma telling me that he had refused to eat his tea, that he was very restless in behaviour , he was wearing his helmet and he was shouting loudly. He had had a small seizure before his tea but clearly they were not over for the night. He had an early bath and seemed to settle down, even asking for bed soon after 8pm. But he did not fall asleep, he was agitated and he continued to jump out of bed four more times, when I would meet him on the stairs, turn him around and steer him back to bed. I tried both cuddling him to sleep and the more stern, kiss and leave approach but neither worked.

On the final occasion, we were going to bed too at 11pm, so I decided to sleep next to him as I was not comfortable with how he was behaving. Even then he was not sure if he liked me there – he would wrap my arm around him tightly – or he would smack me and try to push me away. I think I must have just nodded off, just before midnight, when I woke with a start as he was having a  violent seizure across me. I came too quickly and was able to reassure him. This was clearly what he had been expecting all night yet it did not land until 11.54. Afterwards he was cross and refused to stay in bed, I wrestled with him for a while as he was still trembling, but then I gave in and we came downstairs. He had some Weetabix and watched some Shrek, and I thought that we were all set to be up all night – like we did for two nights running in the bad old days.

However, just now he has taken me by the hand and led me back upstairs as he wanted to return to bed. I have left him to it but I am watching him from downstairs on the baby monitor to ensure that he settles and so far, it seems that he has nodded off, exhausted. After such a rude awakening and a quick rush of adrenalin, I will not be able to get back to sleep straight away but I am mightily relieved if Joshua is able to. This could be a long night.

Reality TV

Sometimes there are television programmes on that call out to me and I was very aware of  ‘Can cannabis save our son?’ on Channel 4 last nigh,t as I had seen several previews for it, featuring one of the couples from Gogglebox. My gut feel had been not to watch it, as the previews that I had seen were sensationalised and it sounded more about Steph and Dom and less about their son, Max, and cannabis oil. But when it came to 9pm last night, I could not ignore it, just in case it gave me some useful insight into the potential of cannabis oil in the treatment of epilepsy. So I watched it and the main things that I took from the programme were :

  • It was a very familiar tale as their son celebrated his 18th birthday while the programme was being filmed. Max too had been treated with anti epileptic drugs since he was four years old , without achieving any real control over his seizures. I watched as a happy Max singing in the car, was hit by a seizure and his carer had to pull over to the side of the road while she reassured him and we saw an exhausted, pale, subdued Max afterwards. This scene was Joshua and I in the car last Friday after school.
  • I watched the tender care that his 15 year old sister lavished on Max, she played with him and protected him and he , in turn, idolised her and was constantly asking for her. Not for the first time did I wish that Joshua had a sister to take care of him and to look after him once we are no longer able to fulfill that role. They seemed to live together in an annexe in the garden and Max had a carer who would look after him during the day
  • Max was devoted to sport, watching a lot of it on television. But we watched him get excited playing tennis with his parents, playing cricket and playing golf at the driving range, so there was nothing wrong with his hand/eye coordination. It made me wish that Joshua had a passion  or hobby like that in his life, something that made him that excited and happy.
  • Steph and Dom spoke a great deal about how frightened they were for their son, how they seemed surprised that Max had reached his 18th birthday as they expected a seizure to take Max’s life one night. About how they needed to grieve for their son’s lost future and how they had hoped that if cannabis oil had worked for Max, that they simply wanted him to be able to communicate with them beyond the level of a 5 year old, and that he would have friends and a social life, so their aspirations were not too high.
  • These parents spoke about the wide range of anti epileptic drugs that they had tried and re-tried over the years, desperately seeking one that would help their sons, but without any success. they read out the grim side effects that they expect and even identified what looked like Joshua’s rescue medication, Midazolam, as the sedative that is given to prisoners on Death Row prior to receiving the death penalty! I  recognised their reference to the sense of hope that they feel whenever a new drug or treatment emerges, an optimism that this might be their son’s big chance. It would not bring Max or Joshua’s lost skills back, but it might bring some relief and stop them from losing any more of themselves.
  • During the film, the parents met or spoke to the two famous mother’s who had fought legal battles for their sons to be given cannabis oil and they spoke movingly about how the drug had changed their son’s lives: one son had given his parents a hug for the first time and the other was excited to explain that he was now able to ride a zip wire These mothers had been prepared to break the law and to travel overseas in order to receive the treatment.
  •  So the parents having done their research, approached Max’s consultant and asked to try CBD as its impact sounded miraculous. The doctor had explained that although the law had changed and it was now legal in the UK, it was not readily available on prescription, that trials are still being conducted into the potential side effects and that patients are having to put forward a case on compassionate grounds, so it is still very rare.

Over the years we have considered and tried a full range of anti epileptic drugs plus more alternative solutions like the Ketogenic diet in 2010 and brain surgery in 2014, yet still Joshua can have uncontrolled seizures that land him in A&E or that have him knocked out on a Friday night. I will ask his consultant next month  again about the chances of success with cannabis oil as we are, like Max’s parents, desperately seeking an end to this frightening and debilitating condition for our son.

Out of Sight but Never out of Mind

I was anxious all day yesterday, wondering how Joshua was doing at school, as it is really hard to let go after the events of last weekend. The escort from his taxi to school helped first things by sending me a text that said “He’s certainly back on form, absolutely full of it!” once she had dropped him at school. That made me smile and allowed me to relax and to get through the morning without phoning school to check up on him. I was at school for a meeting at 2pm so I knew that if things had gone badly, class staff could seek me out and nobody greeted me with bad news.

My meeting overran slightly so when I came out of the meeting room, I could see Joshua waiting at reception with his TA, looking for me or wondering why he had not gone home as usual with everyone else. As he saw me, he ran down the corridor towards me and gave me a bear hug and I knew he was pleased to see me. Perhaps the school day had seemed an eternity for him too? But he had survived it in one piece and we walked happily to the car. I helped him into the front seat and then I folded the wheelchair away and loaded it and his bags into the boot.

As I got back into the drivers seat, I saw that Joshua was leaning forward, drooling and he was having a seizure! He was in that seizure for quite a long time as I reassured him, rubbed his leg and tried to hold his hand so that he knew that he was not alone. There was a gap in seizures so I set off, but then they came back with a vengeance and I needed to give him his rescue medication as he was fitting for ten minutes with no sign of relief for him. My heart sank as I gave him the potion in the car, and I could not help but think:  Here we Go again. As we waited for it to take effect, I reviewed what might have been the cause : over tiredness, excitement at being reunited, his chest infection, relief that school was over…? That really is a pointless exercise as I am unlikely to ever find out, but of course I was wondering if I sent him back to school too early? was it all too much too soon for him? I was reassured slightly when I finally got home and read his home/school diary as it did not read as though he struggled all day; it told me that he was thrilled to be back and that he greeted everyone with his ” I like you!” greeting. He had grabbed a nap at 2pm, so with hindsight perhaps a phased return, with just a morning in school, might have helped.

Once again self doubt creeps in as I cannot ask Joshua how he is feeling? Do you feel ready to go back to school or shall we leave it until Monday? He simply cannot express those ideas and so we, as his parents, have to be his voice and make these decisions for him. All I now know is that he can revert to pyjama days if that is what he needs this weekend, we only have one event in our social calendar today, he needs to be dressed and upright for an 18th birthday party tonight.