Moving in the Right Direction

It seems to have been successful to allow Joshua a quiet day at home to recover : he had much more colour in his cheeks when he awoke, he looked much less washed out. The taxi driver and escort reported that he arrived at school happily and full of mischief and his diary reported that he had a much more active day at school too. So my plan for him to rest and reset seems to have worked and I am very relieved too  as we are out of practice with daily seizure activity and these are not days that I wish to return to. At one time, he would begin every day with a couple of seizures before he had even got out of bed and so we had the daily dilemma of whether or not he should go to school. He was just exhausted all of the time and we lived life on a knife edge. Compared to those days, pre-surgery, he is much improved and it is often a useful reminder to remember how far we have come: last week felt like a bad week for seizures but it was actually just a shadow of what he used to have to tolerate every day, and I am most grateful for that, and everyday that we are not visited by epilepsy is a gift.

Then there were the exhausting times post-surgery, when Joshua would not sleep for 48 hours after seizures; when he was so restless and starey-eyed and looked as though all he needed to do was sleep, but his brain would not allow it somehow. Those dark days were not sustainable for any of us and thankfully, that time has passed too. Yes we had some bad nights’ sleep last week, but they are isolated disturbed nights and in the main, he sleeps better now than he has ever done in his life.

So on this wet, grey November day, I am happy to celebrate how far Joshua has come and lets hope that this week’s seizures, are just a blip on an otherwise pretty even keel.

Tricky Thursday

I was working away all day yesterday, and thankfully though sleepy, Joshua was happy in the morning as I got him ready for school, so I had hoped that he would be alright, if a little tired at school. I had my mobile clasped next to me all day, dreading the call that he had had more seizures , while I would be too far away to be of any practical use. Thankfully that call never came and he seems to have had some fun while at school, even though he was exhausted when he got home.

But the dreaded seizures did come, they just waited until bathtime once again and this time, Yorkshire Grandma had to deal with them.She administered his emergency medication once she had got him into bed and by the time I got home, he had slept them off for around an hour. He looked totally washed out by these consecutive nights of seizures and the Midazolam, but still managed to sit up in bed and smile that I was home. I lay next to him for a while and then felt that my presence was keeping him awake rather than helping him to relax, so I slipped out and came downstairs.

In order to try to break the cycle of tiredness then seizures, I have kept Joshua off school and at home today. He has been able to sleep as late as he needed and it was after 10 am before he appeared on the landing ready to get up. I am hopeful that  a quiet day at home will help to reset him so that he can resume ‘business as usual’ as this is not sustainable and is exhausting for us all. I am not sure if the seizures cause the tiredness or the tiredness stimulates the seizures, as it is certainly a trigger. But hopefully tiredness is something that we can remedy today, whereas I less able to rectify illness if that is at the root cause and he is brewing something.

Once again it is the unpredictability of Joshua’s seizures that makes them difficult to manage, though I am fully ready for Thursday, which has become a troublesome day of late for the last few weeks. Of course I realise that because I have taken precautions today, that will probably – and hopefully – be enough to scare the seizures away!

Friday Night In

Joshua got home from school at 4 pm and he barged into the house, while I was talking to the driver and escort in the rain and wind tonight. We have a coming home routine : I remove his boots and splints and replace them with slipper socks so that he can get more comfortable at home. They have started removing his boots at school during the day too, but sadly this afternoon he stubbed his toe badly and split the top of two of his toes, so he must have given them quite a bashing. So it was my priority to get his boots off, to take a look to ensure that his boots were not rubbing on his sore toes. Next, he has his teatime medication , tonight in chocolate mousse.

Usually he goes into his den to watch the Show, but tonight he stayed in our snug which is super-cosy as we had had the stove lit all day. He lay on the settee while I prepared his evening meal. But before it was ready, he began to experience seizures on the settee – that might have been another reason that he wanted to stay under my gaze, perhaps he sensed that the seizures were on their way and did not want to be alone. One seizure followed another but in between, he kept trying to stand up, thinking that they were over but I encouraged him to stay sitting down. As the seizures were still coming after 5 minutes, I fetched the rescue medication from the kitchen cupboard and threatened Joshua with it, waving it in front of his blurred eyes, hoping to scare them off. Although they slowed down, they were still coming after seven minutes and so, the inevitable happened and I had to administer the medicine. It takes several minutes to take effect and they always seem to be the longest few minutes, as you start to doubt that the seizures will ever stop and have that sinking feeling that it is going to be necessary to call 999. But thankfully, as usually happens, the seizures gradually subsided and he relaxes into a deep anesthetic-induced sleep. So I will keep his tea warm for him until he is ready to eat later. He is likely to be washed out for his Friday night now, but hopefully he will reset overnight, so that it does not blight his whole weekend.

The Demon Epilepsy

November is National Epilepsy Awareness Month and so I wanted to do my bit to improve the understanding of the condition. I had no experience of epilepsy until we had Joshua and so I like many others, only associated it with people lying twitching on he floor, foaming at the mouth – as I had seen one of this type of seizure at school in the PE changing room once before – and it was definitely something to be feared. No ,from first hand experience, I appreciate that there are so many different types of seizures and they do not all have to be the traditional Tonic Clonic presentation. Absences can be much more subtle – they can simply look like a loss of concentration for a few moments, rather like daydreaming , so are not dramatic at all. In Joshua’s case, these mild absences often indicate that something more dramatic is ‘brewing’.

For Joshua, all of his seizures affect his eyes in some way : with absences, he tends to look upwards and stare at the sky. Most seizure types cause his pupils to enlarge and often that can be an indication that a seizure is on its way. For his full blown, tonic clonic seizures, his eyes can roll up inside his head or his pupils can be facing different directions from each other. So his eyes are a useful indicator that something is wrong.

The most frightening type of seizures are the full Tonic Clonic ones and at their worst, it was as though somebody had shoved Joshua very hard backwards or forwards, or even thrown him, as he fell to the floor with such force and rarely with much warning. All of his limbs would be stiff and so he would not crumple like a normal fall and he would have no power or instinct to put his hand out to break the fall. So inevitably he would hit the ground, or furniture, with real force and often his head would take the impact. As Joshua got taller, the chances of him hitting a hard surface increased and even when wearing his helmet for protection, somehow he still managed to damage himself. He has scars all over his head and body from injuries sustained from such falls and we have had several trips to A&E as a result.

Fortunately, these days he is less likely to incur that type of seizure; nowadays he has clusters of seizures where his whole body will tense and tremble for seconds,  while his breathing becomes noisy,then he will relax briefly, before another takes hold. If this pattern lasts for longer than 5 minutes in total, then it is time to introduce his rescue medication, which is a form of anaesthetic, to relax everything. Thankfully Joshua no longer has rectal emergency medication, his Midazolam is released into his gum area, where it is quickly absorbed and within ten minutes, if it has not settled the seizure down, which is almost always does, then it is a 999 call for an ambulance as we cannot give a second dose, as there is a risk that it will compromise his breathing. It means that Midazolam needs to be carried everywhere he goes, just in case. We had to use it last week on holiday and he almost had it on Tuesday night too, but thankfully the seizures stopped on their own with no intervention from me.

And that is one of the problems with epilepsy,  nobody knows when the seizures will strike and so you have to be constantly on red alert. Joshua’s main triggers are heat, illness, tiredness and excitement and any one of those may set his seizures off, he is not affected by noise or flashing lights as some sufferers are. We do all we can to keep him cool in hot weather as that impact is predictable, but excitement is a cruel trigger : just when he is having fun, bammm epilepsy strikes to take the joy away and create a drama. One instance of that was while at a Bruce Springsteen concert a few years ago, one minute he was happily giggily away loving the music and the next, he looked terrified and he had to be laid down on the floor and to take his Midazolam, we all missed the rest of the show.

Joshua has  severe learning difficulties and a weak right side, but I would say that it is his epilepsy that has impacted on him most throughout his life and is the condition that looms over him always, threatening to take hold. Even with 15 years practice of dealing with his seizures, they are still frightening. I may have learned to be outwardly calm and reassuring, but internally, they make me feel sick and scared every time.

Bonfire Night

November the 5th is a significant date for our family for a couple of reasons : It was at a bonfire party back in 1983 that I finally relented and agreed to go out with my husband , after him asking me for over a month. So it represents a special anniversary for us and 36 years seems a lifetime ago – it took us another 12 years before we got married.

But also, Bonfire Night marks the first full seizures that Joshua ever had and it was terrifying. He was 8 months old and we wrapped him up well to take him to a local firework display and bonfire party as it was a typically cold, damp November night. I do not remember anything about the bonfire or whether baby Joshua was interested in the pretty colours and loud noises of fireworks, but the drama began when we got home. We removed his layers in front of the wood burning stove, to try to warm him up and he began fitting. His little body was twitching and his eyes rolled up inside his head for what seemed like a eternity, but then it passed. We did not call an ambulance or take him to A&E – which seems very cool of us now I think -but I took him to the GP the next day and described what had happened. Rather than using the epilepsy word, he thought that it had probably been febrile convulsions from the extremes in temperature that his small body had been exposed to in the one night.

It was terrifying to witness and of course, you feel so helpless as a parent – all you can do is reassure and comfort your child and wait for it to pass. 18 years later, Joshua’s seizures are still frightening to see, that does not get any easier, but I have got more confident that they will pass and of course, now we have emergency medication to use if they do not stop on their own. Joshua was delighted to see me home last night, he came to seek me out when he heard my voice in the kitchen and gave me a beam and several bear hugs. He was unusually content just to sit next to me while we ate our tea and then he enjoyed his bath. He went to bed around 8.30 and I came downstairs and was watching TV, when he appeared again. I took him back to bed and lay next to him for a few minutes, when suddenly his body went rigid and he had a seizure. It was just a single one but it lasted for around one minute then he relaxed. I stayed for a while longer and after more than a 15 minute break, he had another single seizure, which is not his usual pattern at all. I stayed for a while longer, until he fell into a deep sleep and then I came downstairs.

Seizures have sadly been a part of all of his life, from his early days in special care, to that fateful Bonfire night, right up until last night. We have taken  some drastic measures to try to remove them from his life – the most dramatic being brain surgery – but although they are reduced, they will probably always be something that Joshua will have to live with.

In the wars

At first when I woke up yesterday , I was relieved that I did not hurt more after my car accident but as I started to move around, I realised that I  ached all down my right side and that I could not move very quickly, stairs were proving to be a particular challenge. Getting Joshua dressed ready for school, involves quite a lot of bending and he tends to lean on me quite a lot, but we managed that. But after I had brushed his teeth, he gave me a big hug/squeeze around my neck which made me squeal out, so I learnt to be wary of his hugs sadly.

I decided that I ought to go to the doctor to get checked out, as several people had told me that I should, so I made an appointment for late morning.He had me do several exercises involving my arms and turning my head and concluded that ‘the power is still there but it is painful’ and is likely to be so for another 3 weeks, which was very disappointing. But it seems that I have not done any permanent damage to myself thankfully. I went from the surgery into work, to tell my colleagues all about what had happened and to do some work. But I was not comfortable sitting at my desk and i felt rather sick, so after two hours there, I came home again, had some lunch then went to bed.

Yorkshire Grandma met Joshua from his school taxi so I left her to it, but he seemed to like having us both around. I got waves as he led her off by the hand into his den. But I gave him a bath after she had gone, as he runs the taps as a clue to what he would like and he drains all the hot water away! after he had finished his bath and I had washed his hair, I was standing beside the bath when he began to have a seizure. I quickly saw what was happening and held his arm so that he did not risk going under the water as he did at the start of this year. I also immediately removed the plug to let the water begin to drain away. Once the worst of the seizures had passed, they slowed down so I was able to help him up and out in between fits, then we staggered together to  his bedroom. He had a few more small seizures sitting on his bed so I reached for the emergency medicine, showed it to him and watched and waited. To my relief he had no more and he curled up in his bed, exhausted. I lay next to him for a while just to be sure, but when he began snoring I came downstairs to make my tea, with the monitor turned right up so I could see and hear any movement.

I was halfway through eating, when I heard movement upstairs and when I looked at the monitor he was no longer in bed. So I got upstairs to meet him coming down to see me, his eyes bloodshot from the earlier seizures. He came and sat next to me in the snug while I finished my meal but then the seizures picked up again – he must have known they were coming and did not want to be alone. So this time I did not hesitate, and I administered his emergency medication and took him back upstairs while he could still walk. We lay together on his bed while it gradually took effect and all was calm again. I was so tired that I fell asleep with him, we were both in the wars yesterday so lets hope today is a better day.

No Show Without Punch

Joshua came with us to a country show yesterday, which is really our idea of fun rather than his, although there are parts of the experience that he enjoys. He has not come with us for the last few years as his respite weekend has always coincided with August Bank Holiday weekend and I am sure that he has not missed it much. But this weekend he has come away with us so he came along to the show. Previously he has been in his wheelchair but the new -walking everywhere Joshua strode in amongst the cattle, holding our hands. But it was not long before he wanted to sit down and as it was lunchtime and we had passes for the Members Enclosure , we walked there where he could sit down and watch events in the show ring too.

It was a hot day and he grabbed at someone else’s bottle indicating that he was thirsty so my husband went to buy him some juice. It was served in those flimsy plastic cups which he squeezes too hard, so he went back to find a better container for him. He returned with a bottle of water and a champagne flute made out of solid plastic which he rejected, in favour of the original cup. He ate a bag of crisps, rejecting his ham sandwich, while everyone else enjoyed salad and pudding. His Dad went to buy him a portion of chips to tempt him but he was bad tempered while he waited, smacking me and throwing my iPad onto the ground. He picked at the fries when they arrived, but not with his usual gusto and then it became clear the reason  why….

Joshua bent double in his chair and had seizure after seizure. My husband lowered him onto the rug on the ground while I timed his seizures and tried to reassure him. Once they were still coming strongly after 8 minutes, I gave him his rescue medication and it seemed to work almost immediately, as I could see him relax. But we knew his afternoon was over, as within five minutes he was fast asleep on the rug – he even let me rub sun-cream into his face, which illustrates just how deeply he slept. I stood over him, creating a shadow, while he slept, while the others looked around the show and then later, I took my turn. Joshua did not wake until the end of the show at 5 pm and even then he was very wobbly with his walking back to the car.

We had a nice day out in the sun and I particularly enjoyed watching the terrier racing, which our Kevin had a go at, but it was not the day that I had envisaged, thanks to epilepsy.



Friday Fitting

By the time Friday comes around, we are all exhausted in our family. Joshua was very weary when he got home from school, he went through to his den and curled up on the settee where he dozed while waiting for his tea to be ready. He ate his quiche greedily, then resumed his sleeping position, contented that he was full again. We made the most of the quiet and had our late lunch/early tea and Joshua unusually appeared just as we finished – usually he arrives as we sit down to eat and then creates as much distraction as possible ,so that he gets my attention!

My husband declared that he wanted the first bath, but Joshua heard the water running, and he muscled in on his dad’s bath and he jumped his place in the queue! Joshua enjoyed his bath for about 20 minutes and then, unusually, he stood up to get out. As I looked at his eyes, I saw that they were rolling in his head and I immediately recognised that a seizure was imminent ,so I lowered him back down into the water, before he fell down. As the seizures arrived, I was able to hold his head up but I was trapped under him, so I shouted for his Dad to come to help us. Luckily he heard me and came quickly, as the seizures rumbled on. While his Dad lifted Joshua up under his arms, I grabbed his feet and between us, we maneuvered him out of the bathroom and down the corridor, to lie on  towels on his bed. I marvelled to myself at how I had managed such a procedure earlier this year on my own, as it seemed to be difficult, even with two of us last night.

As the seizures still kept coming, though slower, on his bed, my husband passed me his rescue medication. I am always reluctant to administer it when the seizures seem to be slowing down, so I told him, one more and you will have to have your Midazolam, while waving the syringe in front of him.  But my threat did not work as another came, so I gave him the drug, then lay next to him on his bed watching the seizures finally subside. They took up to ten minutes to stop completely and then soon after, Joshua had no option but to close his eyes and fall asleep. The combined effect of  a full week of school, eight minutes of fitting then the anesthetising drug, took their toll on him and he fell into a deep sleep with both small dogs on his bed to loyally guard and protect him.

That is the second dose of emergency medication that Joshua has needed in less than a week, so that is not good. It will leave him drowsy today still, as it’s effects stay around for at least 24 hours, so that is not the best start to his weekend. But I am glad that on both occasions recently, he has been at home and so we have been able to move swiftly , he has been able to sleep it off afterwards in comfort and the Midazolam has done its job, so there has been no need to involve ambulances. The ruling is that 999 has to be called if the rescue medication does not take effect within 10-15 minutes, and thankfully on both of these latest occasions, it has worked in a timely fashion. It is always stressful, even after years of experience, as the threat that the seizures will not respond is ever present and a hospital admission, or a visit to A&E, is the last thing that any of us want ,or need, at present.

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.

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.