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.

What a difference a week makes…

I find it hard to believe that this time last week, I was about to get a call from Joshua’s respite provision to tell me that the paramedics were with him and that he was on his way to A&E. That was a very stressful and emotional 7 days and they are starting to feel already , rather like a nightmare and not reality.  Over the years, I have learnt several things about how to cope best with the unpredictability of life with Joshua :

  • Accept that we are not in control of events in his life, that epilepsy has the upper hand and could jump in and takeover at any moment.Do not become too tied to plans that have been made, as they can be turned on their heads, so a flexible outlook is the only way to achieve sanity. So choose your friends carefully as they too need to be flexible enough to accommodate last minute changes of plan without blaming you .
  • Make the most of the calm, seizure-free days but never take them for granted as the moment you do that, then you are asking for trouble and inviting seizures into your life. so you always need to be on red alert, even if a day starts well
  • Try to relax and keep calm;  do not get too anxious about  the smaller seizures, as they are just blips along the way. Save your energy for the uncontrollable seizures that result in trips to A&E, as they are the most dangerous ones and they justify anxiety. Thankfully in his 17 years, we have not had too many of those ambulance dashes and I know that there are some epileptics who are in and out of hospital all of the time.
  • Accept that there is not always an explanation as to why a cluster of seizures arrives at any particular moment. On this occasion, it was probably Joshua’s cold that made him more vulnerable to epileptic activity, but there is not always a clear trigger and often other people like to understand the reason , asking have his drugs changed for instance. I accept that these happen due to a deformity in his brain and so there does not necessarily need to be any explanation, it can be just one of those things.
  • The nature of seizures, and their impact, changes all the time : the most dangerous period of Joshua’s epilepsy journey was when he was having full tonic clonic seizures that would send him backwards, flying through the air as though he had been pushed. As he was a tall boy by then, he was vulnerable to hurting himself on furniture and we had several A&E trips with his head cut on, for instance,  the hearth, a table and a public toilet, even when wearing his helmet. Now they have altered and they are much more gentle in appearance : he will have a cluster of jerks in quick succession after each other, so they are very different and are easier to manage. But we never know what type of seizures lie in wait or how he will respond. When he was younger, Joshua’s seizures made him very tired and he needed to sleep afterwards. Post-brain surgery, we had the opposite and after seizures he would stay awake and restless for 48 hours after seizure activity.
  • Be open -minded to potential treatments that are offered, as well as drugs and surgery, we tried the ketogenic diet.  It was like an extreme version of the Atkins diet, which restricts protein and carbohydrates, but  uses more fat in recipes. It did not work for Joshua, after  6 months of trying really hard, but it has been miraculous for some children. Keep hopeful that one day,  a solution will be found for Joshua that will send this demon away for good.