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!

Mixed Blessing

I heard that yesterday was one of the hottest days of the year so far. Being by the coast, we always have an easterly wind that is refreshing, but even with that it was hot in our garden yesterday. As heat is a key trigger for Joshua’s seizures, sunny days, though beautiful, are always a mixed blessing for us. Everybody loves the blue skies and I try to dress Joshua in as cool clothes as I can ; He has been wearing shorts at school all this week and will probably now be dressed in them until September.

We did our weekend Tesco shopping spree in the morning, before it got too hot. He was happy to push the trolley and not try to lie down or run off, so we managed to pick up everything on the list this time. He sat at the end of the till while I loaded everything onto the conveyor belt and it was only as I had almost finished packing that he stood up and dashed towards the exit, so I had to take chase. I am sure the weekend checkout staff are highly amused by our antics each week.

We had lunch when we got home and I made a lasagne for my visitors today, while Joshua chilled out in his den enjoying music. He dozed off so I took the opportunity to go outside and cut the grass, leaving the back door open, so that he could find me and I could check on him. I had almost finished. when Joshua appeared so I brought a picnic rug outside and the puppies, and we played and lay in the sunshine for a while. The pups clambered all over us, it was their first time in the back garden and they were delightful.

We came back indoors when we got too warm and Joshua went back on his settee in his den, which stays nice and cool thankfully. I was making a drink in the kitchen, when I heard a bump and he had fallen off the settee and rolled onto the floor, having a seizure. I sat with him, while between seizures he would smile , wave or give me a little thumbs up, before another would strike. I had his emergency medication ready, but thankfully they slowed and ceased without needing to administer any, as two doses within 24 hours of each other would be a bad weekend.

I feared that his seizures would wipe him out for the rest of the evening, but he had a small nap then enjoyed his tea. He has begun to run his own bath these days – only forgetting the plug! – so he indicated that he wanted a bath by running the taps , so he had a coolish bath before our guests arrived. He was in his pyjamas and his eyes continued to roll some more, with seizure activity on and off all night, but he joined in the dinner party and stayed up with us until 10 pm.

I have checked the weather forecast and it looks like sunshine and high temperatures for the rest of the week too, so school will need to be ready with their best cooling him down procedures. The summer term is always a problematic one for him, but at least we are prepared for it.IMG_5467 (002)

 

Trigger Happy

I think that I might have put a jinx on the sunny , warm weather and blue skies that we have been enjoying lately! This morning it is cold and wet, so Joshua will not be going to school in his shorts as he has been doing all week. Yesterday I sent an email to school to advise them that as heat was a key trigger for Joshua’s seizures, we are entering a difficult period for him. The 6th form at school are housed upstairs and it gets very hot there, with limited ventilation and outside space.

I asked that Joshua is kept as cool as possible by removing his epilepsy helmet and his boots, splints and socks too, when he begins to overheat this summer. I am confident that the risk of seizures is worse than the risk of him falling and hurting his head, as his seizures are less violent than they once were and he tends to be seated for them these days. Joshua rarely wears his helmet at home, only when he looks to be brewing a seizure, so it tends to be a precaution that is typically used at school and at respite. I send Joshua to school in his shorts on sunny days, so that his long, thin, white legs and nobbly knees are on show.

The last time I can recall Joshua overheating badly was at the school prom last July on a really  hot, sticky evening. Joshua was wearing his suit, including a waistcoat, and as he got hotter, he would not allow the staff to remove his jacket. When we arrived, he had a high temperature and so immediately I stripped him of his jacket and waistcoat. I removed his helmet and boots and we took him outside where there was a breeze and I waited with him, while my husband went to buy some Calpol. We sat in the cooler bar together and our droopy son gradually recovered and soon he was dancing the night away and we were the last to leave the party.

On holiday in sunnier climes, Joshua is most likely to be found either in the shade, or more likely, in the comfort of an air conditioned building. He is not a sun worshipper and has pale freckly skin that would burn easily if given the chance too. He will not wear a sunhat either, from being a baby, Joshua would not tolerate anything on his head. He wriggles away from his helmet everyday, and it only stays on because if the secure chin-strap.

So now that we have made these hot weather precautions, that has successfully scared the sun away. But should the sun decide to put in another appearance before September, we are all ready for it!

Our Big Night Out

(We are having a great holiday so far and I have written a couple of blogs which have not saved or published, so if this does not work today, I will take a break for the holidays as the technology is too trying, when you are staying somewhere without wifi)

On our first day on holiday, we went to a country show where one of our favourite local bands, Lucid, were playing, and we were greeted like old friends , with hugs and catch up chats. My husband and I enjoyed the performance, but Joshua found the heat too much and slept on me, laid out on a haybale, throughout. We were told that they had a local evening show too, at a bigger venue, so after a quick nap at home we headed off to see them for the second time in the same day. It was a much bigger crowd and stage and with it being cooler too, Joshua certainly preferred it. He watched the show some of the time and pushed his own wheelchair around some of the time. He made a few new friends, as he tends to do at this events : a security guard came over to ask if he was a Fleetwood Mac fan, He high5’d a few members of the audience and one young girl asked me if she could say hello to him, of course I gave me permission : it turned out that her older sister has cerebal palsy and we had quite a chat. She apologised if she was being patronising towards Joshua and I explained that she was not, but that it was those who smiled, said ‘bless’ and thought how lovely that he was out having fun, that had the more patronising outlook.

Joshua clearly enjoyed himself and I think although he was wandering around amongst the crowd, he was probably less disruptive than some of the drunken obervers who were balancing on each others shoulders and bumping into other dancers.

After the Lucid performance, we stayed on and enjoyed another band, who sang familiar covers, and we did not leave until 11pm! Given that Joshua is usually in bed at 9pm and  am not too far behind at 10ish, this was indeed a Big Night Out for us, and he was asleep as soon as his head hit the pillow. He was pretty dozy yesterday, lounging around, chilling most of the day. At 3pm we went down to the beach and hired him a lounger to lie onand watch the tide coming in. He dozed and we swam in the sea, with him clearly in sight. As I lay on the rug, drying in the sun, I heard a familiar snorting and heavy breathing and jumped up to see Joshua having a seizure, which  ran into one after the other. In the end I had to administer his rescue medication on the beach and he slept it off on his lounger, until 6pm when they wanted to pack them away and so we had to wake him and bring him home. Sadly the seizures were the result of two of his key triggers : heat and tiredness, so he is extra-vulnerable on his holidays, when you add in excitement. No more big nights out for a while, until we recover from this one fully.

Fits & Starts

Joshua’s seizures are made worse by the heat and by excitement, so on the last day of term and the hottest day of the year so far, epilepsy was bound to strike. I got home from work around 6.45 and Joshua was happy and very pleased to see me, he kept following me around the house. I sat with my cup of tea to watch some TV and to put my aching feet up, and he came and snuggled in next to me on the settee. Within 5 minutes he began fitting : his legs and arms went stiff, his face contorted, his eyes rolled and he began heavy breathing. I tried to reassure him but he had more than ten short seizures, one after the other, and so I had no other option but to give him his rescue medication to try to stop them. He does not like the taste of Midazolam, but I think he knew last night that it was necessary, as he did not resist like usual.

More seizures took him over but they began gradually to slow down, with longer gaps between them so I was confident that the powerful drug was doing its job. However I had the telephone in my hand, as a 999 call was my next option as we cannot give two doses of Midazolam, it can compromise breathing and so he needs to be monitored by a health professional.

Joshua gradually relaxed and fell asleep, under the spell of Midazolam. I recovered myself and then ate my tea, sitting beside him throughout. An hour later he stirred and so I decided to take him to bed where he would be more comfortable. He was quiet while I undressed him and got him into his pyjamas.  I was reading him a story in bed, when he started to have more seizures. We would be looking at calling an ambulance at this stage  as I cannot give him any more rescue medication for 6 hours, so there were still another five hours to go. Fortunately, I hushed and stayed with him to calm him down and he only had 3 more and then he settled down again, exhausted.

Lets hope that this is not the shape of the school summer holidays that we can expect moving forwards!

Summer sunshine

We have had a run of warm, sunny days which generally make people relax, feel better and smile a lot more.I have made the most of it by cycling the 2-3 miles to work which is a great start to the day. But the heat can be a trigger for Joshua’s seizures so it is a mixed blessing often. He does not really like the heat and tends to avoid going outside in it if he can when it is warm, he would not thank us for baking in the sun on  Copacabana beach!  He has been to Florida a few times in his life already and he does not appreciate the sunshine there at all, it somehow makes him droop in the heat and then often results in seizure activity.

Joshua’s very first seizure as a baby was related to a high temperature : we had taken him out to a firework display on a cold November 5th and had wrapped him up warm in several layers to enjoy his first Bonfire Night. He had been unimpressed by the fireworks and had got cold, so when we got home we had warmed him up suddenly in front of the fire. The next thing that happened was a seizure on the snug floor in front of the fire and it was truly terrifying, as we did not know what was going on. Doctors did not use the word epilepsy then, but it was a febrile convulsion brought on by a high temperature. But it gave us a taste of what was to come.

The problem is that Joshua does not take preventative action that other children would : he has always been a poor drinker and so he can quickly get dehydrated. We used to laughingly describe him as a camel as he will drink enough to store and then not drink much at all for a couple of days. It has become the norm now so I do not stress as much about it as I used to, but that will not help him cope in the summer. I tend to give him liquidy foodstuffs like yogurt and fruit to try to top him up. Also he cannot remove his own jumper, so if he is too warm, he will simply get hotter and hotter and not even indicate that he would like his jumper to be removed, so we need to be vigilant on his behalf.

So we just need to be extra-aware during the sunnier days, but fortunately, looking out of the window now, the brief heatwave has gone away and so Joshua will be relieved, even if others are disappointed