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.

Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

Intervention dilemma

When I got home from work last night, Joshua was pleased to see me. He was snuggled under a blanket watching his Live 8 show with Yorkshire Grandma, the picture of contentment. He gave me one of his bear hugs and told me that he liked me and all was well. We had an early tea , so he had an early bath as his hands were cold, so that warmed him up.He was reluctant to get out of the bath and he soaked the bathroom floor with his protest splashes.  He pottered about in his pyjamas but was tucked up in bed before 9pm and I expected to be in for  a quiet night. I came downstairs to watch some television,  but I soon nodded off.

I had a rude awakening  a few minutes later, with my husband shouting for me, first through the baby monitor that I bearly acknowledged as it filtered into my dream, but then he came downstairs to wake me with the words that I hate to hear : ” Joshua is having a do!” That brought me round immediately and I ran upstairs, to find a quivering Joshua on his bedroom floor. He had either fallen out of bed or he had climbed out to come to seek help and had fallen, but he was wedged between the bed and his bookshelf, rapidly going in and out of spasms. They did not slow down while we comforted him and my husband helped him back onto his bed between seizures. I sat with him, rubbing has back for several minutes,but they kept on coming. As we did not know exactly when the first one started, we agreed to give him his emergency medication, to intervene as they showed no sign of abating.

It is never an easy decision to administer Midazolam  as it leaves him so groggy for 24 hours afterwards, but on this occasion, as the seizures kept coming, it was the right thing to do. Joshua seemed to know what was coming and he took the anaesthetic well, with no spillage , which is always a relief when you are syringing it into his gums during seizures. Thankfully, almost immediately I felt his body relax and quickly, the frequency of seizures began to slow down. I lay next to him, singing and talking to him, as he fell asleep and the last spasm left his body. My mind started to imagine what might have happened if he had got to the stop of the stairs before his seizures began, so I held him tight, relieved that he had fallen where he did.Eventually, I slid out of his bed and we watched him closely from the baby monitor downstairs, as we had our hot drink before bed.

As I went up to bed, 30 minutes later, his breathing was loud and laboured and he was sprawled across the bed, fast asleep. Taking the baby monitor to bed was not going to reassure me enough and so I curled up across the bottom if his bed to watch him and listen to him, and grab what sleep I could. At 2.30am I climbed off his bed, his breathing sounded normal and he was no longer clammy to touch, so I retreated to my own bed for three hours of better quality sleep. I had agreed with Yorkshire Grandma, who is living with us for another week, that I would go swimming this morning, but I am not now going as I want to see how he is when he wakes up later – I will swim another day.

Despite many years of practice with epilepsy, it never gets any easier to see Joshua suffering like that and I never give him Midazolam lightly, it is always a dilemma. It is of course typical as I had sent an email to his respite provision, just yesterday, bragging that he had not needed any intervention all over the Christmas holidays. Let’s just hope that this is not a new cluster of seizure activity, lets keep our fingers crossed that last night was a one off and that it will not rumble on this respite weekend.

Fitting In

Joshua had a bad day for seizures yesterday : his day began at 4.30 am when he came downstairs pale and clammy, indicating that he had probably suffered with seizures in bed, perhaps that is what woke him up. He stayed awake until 6.30 when he grabbed an extra hour of sleep, but he was very reluctant to get dressed for school. But once dressed, Joshua was happy enough and he was pleased to see the taxi driver and escort. He was eager to set off as he shut the car door in my face, while I was trying to kiss him goodbye, perhaps he was bored of listening to us talking.

I had a call from the school nurse as I was on my way back to work, after my lunch hour. He was having very short seizures that lasted about three seconds, but unusually he was coming out of them fully in between, responding and talking, then some time later would have another. We discussed the use of his rescue medication but rejected it as it was not in the normal pattern for him. Gradually the gaps between them lengthened , until the seizures stopped. It was at that point that I should have offered to go and pick him up, rather than allowing the taxi to retrieve him. But they told me that he was happy and I had work to do, so I did not offer. but hindsight is a wonderful thing. It always feels like a big responsibility to make a judgement remotely as you are totally reliant on the information that you are told, whereas when I can see Joshua for myself, I instinctively know what is the best thing to do.

An hour later the passenger assistant in his taxi called me to say that, similar to last week, they were taking Joshua back to school as he had already had three seizures. The taxi does not carry Midazolam yet – though there is a plan that they will – and they are not trained to administer it, so we have guidance that they turn back to school if they are less than ten minutes drive away, to have access to professionals with access to his emergency medication. I tried calling my husband, but got no reply and I knew that he was going to walk the dogs after lunch, so I fled work to drive the 30 minutes to school.

When I arrived at school, it was virtually deserted, as it turned out that all staff were in training and fortunately I have a fob which enabled me to swipe myself into school through the security doors. I found after school club but no sign of recovering Joshua as I had expected, then we tracked him down at the back of the staff training session! He was pleased to see me and did not look as washed out as I had expected, as he had not been given his rescue medication. I was debriefed about what had happened and then we headed home, with occasional signs of seizure activity still rumbling on. Once we had got home, Joshua headed straight for his den where he curled up on the settee with his boots off and he just wanted to sleep it off. I went into the kitchen to start off his evening meal, checking on him every few minutes. After 25 minutes, there were two sounds coming from den that told me clearly that he was awake again: the fast strumming of his guitar, followed by the repeated slamming of the door, banging rhythmically and with determination, both sounds told me that he was back in the room and raring to go. He ate his tea in record speed as though he had built up a real appetite; I imagine seizures use up considerable energy. He pottered around for a while longer and then he went to bed and I am hoping that sleep will act as a reset button and that today will be a better day.

It’s a Dog’s Life

I enjoyed a programmed called ‘Dogs’ on Netflix this weekend and it really made me think. It is a documentary series of six different ways in which we use dogs in our modern lives and the first one was, coincidentally, a seizure alert dog in USA. The film features Corinne, a teenager, and her family. She suffered badly with epilepsy and as she would stop breathing during her seizures, so she could never be left alone. Her mother slept on the floor of her bedroom every night, after she had her first seizure at puberty, as they had found her blue after her first unexpected seizure. It showed her her younger sister was her constant guardian and how angry and upset Corrine would becoame after seizures. We needed this back-story to set Corrine’s story in context, but my husband would say, ‘Isn’t our life hard enough, without watching someone else’s struggle?’ but I enjoy this kind of progrmamme, showing other families and how they manage with familiar struggles.

The film went onto show the whole family’s excitement to hear they had been accepted for Rory, a seizure-alert dog and all the hopes that they were pinning on this labradoodle puppy. They had to go on a 12 day induction programme with 10 other families, each with different disabilites but all due a support dog. The young dogs were introduced one by one and each child immediately fell in love and cudled their furry friends. Of course I wept and Ruby, our intuitive cocker spaniel, climbed on my knee and tried to lick the tears away, which made it worse! They were told that these were working dogs, not a family pet and that Rory’s role was to take care of Corrine. So once again , her younger sister was upset as she had been hoping to gain a family dog but once again her poorly sister took priority. She was not even allowed to feed Rory treats or take him out to play, as he had to focus on his work and on Corrine. I had never before seen epilepsy from a sibling’s perspective and it was a sad angle to understand.

As part of the training, Corrine lay on the floor twitching to demonstrate her seizure pose and her Mum had to tell her what she was like as she never knew, as she was inside rather than outside of the seizure. Rory barked continuously while she  lay fitting on the floor , to gain attention. So the intention was that Corrine could gain some of her independence back, as Rory would alert people that a seizure was happening, or even coming, once he got the scent for it. She would finally be able to go out for a coffee with her friends, without her mother tagging along as Rory would be her minder. Rory would be by her side at school, helping her to cope throughout the day and giving her independence and reassurance. When she was angry after a seizure, Corrine could cuddle Rory, who was woolly like a sheep. The arrival of the seizure alert dog was going to change her life, as well as that of the entire family. My only criticism of the film was that it needs a follow up to see how her life has changed with Rory in it, as it ended with the family all being interviewed about their hopes and dreams, I was left wondering if Rory had delivered those dreams to them.

Together again

It seeemed a long time since I had seen Joshua, as I had packed him off to school on Friday morning, with his respite bag, and so I was looking forward to seeing him yesterday afternoon after school. I had a meeting there at 1pm so I had asked if I could travel home with Joshua in his taxi, as my husband dropped me off at school on the way home from our weekend away, so I was car-less. So when Joshua first saw me, waiting in reception for him, he beamed, gave me a hug and pointed at me and he must have assumed that I would be driving him home. So he looked rather startled and confused when I followed him to his taxi and helped him in, in the rain, then climbed in next to him. He kept grinning and pointing alternately at me and the taxi driver, trying to work out what was going on.

However, within two minutes of leaving school, Joshua began to have seizures , sitting next to me. I held his hand and reassured him, as they came one after the other, and his face took on a familiar pale, drawn appearance. They continued for several minutes and I began to reach for the rescue medication, sad that I was going to have to administer it so soon after being reunited. Thankfully, the seizures slowed then stopped on their own and so I cuddled my subdued son for the rest of the 30 minute journey home, while chatting to the taxi driver.

I recalled that he had suffered seizures when I had last seen him on friday morning too, so it occurred to me that I was the common factor here. Could seeing me be just too exciting? As excitement is a familiar trigger for epilepsy, or perhaps he was just so exhuasted from a busy weekend at respite and so finally when he had relaxed, the seizures had crept up on him. It is useless to speculate as we will never know the cause I suspect, so I should just be grateful that they stopped on their own.

Once home again, Joshua whizzed straight upstairs to his bedroom, where he wanted his boots removed and he requested ‘Shrek’ on the ipad, while I prepared his evening meal. He seemed to be delighted to be home again, amongst familar surroundings and with the two people who he loves most. I really hope that he understands why he goes away from us one weekend in four and that the break in routine does him as much good as it does us, as we love it.