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.

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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.

Crash, bang, wallop

Yesterday I wrote about the unpredictability of Joshua’s behaviour, but last night I was faced with another element of unpredictability : his epilepsy. He had arrived home from school simply exhausted, as he often does by Friday , so much so that he had curled up to sleep on the settee, almost immediately for a nap for an hour. He had his tea then an early bath, once he woke up and was on good form after his sleep, as though he was then fully topped up.

I took him into his bedroom from the bathroom , where I began to dry him. Then I turned away to pick up his pyjamas, and heard a crash: a tonic clonic seizure had taken hold of him and unusually, he had crashed forwards rather than backwards. If he had gone back, he would simply have landed softly on his bed but sadly he went forwards this time, into his chest of drawers – he sent everything flying and even knocked the TV over, so that it landed on his head. While Joshua is fitting, all his limbs are stiff so I was trying to lift him off the drawers, concerned that he might have broken a rib, but he was so solid and stiff that he was difficult to manoeuvre. I had to wait for the seizure to subside to be able to lower him onto the floor, where he lay flat out while his eyes darted around his head still.

My husband appeared on the scene, having heard the crash from downstairs, and he found a blanket to cover him up with ,then fetched the emergency medicine, just in case, as the seizure was still going on. After what seemed like an eternity, Joshua pointed at me and smiled, then gradually he tried to sit up. He had gone ghostly white and he looked shattered, so I continued to get him in his pyjamas and slid him into bed. Unfortunately it took several attempts to get him to stay in his bed and even later, before he gave in to sleep.

When I woke up at 5am this morning, I was surprised to find Joshua in with me as I have no memory of him climbing in! I slid out and came downstairs to let the dogs out but soon afterwards, a bleary eyed Joshua appeared downstairs too. I gave him some weetabix ,which he ate greedily, then he took himself back up to bed and all quiet for now.

I am out of practice of those full tonic clonic seizures, more recently he has had clusters of jerks rather than seizures that throw him around. It just shows how quickly things can change, as I only turned my back on him for a couple of seconds. Luckily no real harm was done and we survived in tact.

Tales of the Unexpected

Almost just as soon as I posted my blog yesterday, Joshua began to have a cluster of seizures ; he was curled up on the settee next to me, just dozing off, and then his breathing became laboured and his eyes opened and his arm tensed and stretched out. I sat next to him, grabbing my phone to time the seizures, and held his hand and stroked his back, to reassure him that he was not alone. He had 11 of those seizures in just five minutes and so I left him to go to the kitchen to fetch his emergency medication, as it was not looking as though they would stop on their own.

The seizures started to slow down in frequency, as after 9 minutes, he had endured 14 seizures and gradually they stopped, without me having to intervene, but it was an intense quarter of an hour for us both. Joshua then only wanted to sleep, so having been up and lively since 3.30, at around 6am, he went into a deep sleep. I suspect  that he had a sensation that the seizures were on their way, since 3.30, possibly that was what woke him up and so it will have been with some relief that they finally arrived and in a way, he could now relax.

But this gave me a dilemma, when at 7am he was still fast asleep and I would normally have been giving him breakfast. I have found in the past that, if he is woken before he is ready, that he is more likely to begin fitting again. So I decided to cancel his taxi to school and to text work to say that I would be late into the office, and to see how he was once he woke up, only when he was ready.

Joshua did wake up after almost three hours and he seemed to have recovered – he slept himself better! So I got him dressed and set off to school, where we arrived almost an hour after his usual start time. He was happy to be there and he greeted everyone that he saw on his way in, telling many of them that he ‘liked’ them. I was confident that his seizures were behind him, but you can never really know for sure, you just need to have faith that the school staff will do the right thing for him, should seizures begin again. They have school nurses there who have his emergency medication if required.

So I returned to our home town, where I work, and got into the office by 11am, feeling as though I had done a day’s work already!

Intentional Rescue

Joshua has an Epilepsy Care Plan, that applies at school and when in respite, which advises staff when medical intervention is required for his seizures. He has Midazolam as his rescue medication, and as I understand it, this is an anaesthetic which dulls everything ,in the right dose, including the electrical waves in the brain, that  generate seizure activity. Joshua has had this same rescue medication for many years now and originally it came in little bottles with four doses in them, that you had to draw up with a syringe. The problem was that it was possible to overdose by giving him up to four times the recommended dose and once opened, the bottle leaked, so you would think that you had three more doses with you, only to find that it had all drained away into your handbag!

Thankfully, pre-measured syringes were provided, maybe five years ago, so that they were more convenient to carry around, it was easier to give a syringe to school and respite and more important than this convenience benefit, it was impossible to give Joshua too large a dose. I can recall the training from the Epilepsy Nurse to our then respite provision, it was the best innovation ever, as there had always been anxiety amongst school/respite staff that, in the heat of an emergency, an overdose could be given. It is powerful stuff , so much so that we are only allowed to give Joshua one dose – if it does not work, then we have to call 999 as his breathing would need to be professionally monitored in the event of giving a second dose.

We have only had to do that a handful of times in his life and the most memorable was back in Easter 2010 : we were on holiday in the Yorkshire Dales and Joshua began fitting, so we gave him the usual dose but the seizures did not stop like usual. We were in a remote village and so fear set in about the availability of the emergency services and when I called 999, they assessed the need and sent the Air Ambulance for him. I was in such shock that when they told me that is what they were doing, I told them that the garden was not big enough to land a helicopter in. They landed in a field near the local pub and an ambulance drove me and my still fitting son to that field to be loaded on. In  what seemed like an instant, we were airlifted to Middlesborough hospital, my husband had to follow on by car. Joshua was still having constant seizures and so he was taken immediately into Resus , where they tried a variety of rescue medications. Eventually a very smelly, powerful rectal drug called Paraldehyde did the trick and Joshua was taken to Intensive Care as he had had so many drugs and had been fitting for so long. We were moved onto the Childrens’ Ward the day after and stayed there for around ten days. They warned me that Midazolam might no longer work for Joshua and that Paraldehyde might need to be his new rescue medication. Thankfully that is not the case and for whatever reason, it started to work again, as it is relatively easy to administer on the move, in a public place as it is administered into his mouth and absorbed by his gums.

I carry a syring a Midazolam with me wherever I go and we have to use it, while out and about, too regularly – the last time was in the car, driving home from my Mum’s house when he began fitting while I was on my own on the motorway, which was frightening. It takes around 10 minutes for the drug to take effect and in the old days, it would knock younger Joshua out for hours, but now it just makes him drowsy, but does not necessarily send him to sleep.

While Joshua has access to Midazolam at home and at school, there is none in his taxi on the journey to and from school, which is a battle that I am currently fighting. I was told that Joshua’s escort is not trained nor paid to perform medical interventions and that, should the situation arise, that they should call 999 and await the paramedics. His journey to school takes around 30 minutes, so they have guidelines about bringing him home if he starts fitting within ten  minutes of home or returning to school if he is just ten minutes from school. The school journey is short enough to not be a big concern but the drive to his respite provision, once a month, takes over an hour and during that time, Joshua is very vulnerable. It was agreed in Joshua’s Education Health Care Plan meeting that the Passenger Assisitant needed to be able to administer Midazolam , in order to keep Joshua safe but as yet, it has not made it onto his paperwork and the Transport department are resisting taking responsibility for it. After several unsuccessful conversations with Transport, I am now taking my own action to protect my son : I have emailed the epilepsy nurse to ask if she will train the PA, if she is willing to be trained and responsible. It is simple common sense  but in my experience, that is not the rules that Transport abide by, but we continue to fight for what is right for Joshua.