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!