Edinburgh teenager Josh Wright diagnosed with Cyclical Vomiting Syndrome after being violently sick every five minutes
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Thirteen-year-old Josh Wright, from Portobello, was diagnosed with Cyclical Vomiting Syndrome – which causes repeated episodes of vomiting and nausea – after years of suffering from what at first appeared to be sickness bugs. He was first hospitalised when he was just one year old.
Convinced there was something else causing her son’s illness, Josh’s mum Julie set about trying to find another explanation and spent the next four years of his life keeping a log of his sickness.
She discovered he was falling ill every 12 weeks and would start vomiting during the night and be sick every five minutes until morning. He was also struggling to keep any fluids down during these times and at times would be unable to talk.
"We kept getting told it was just a bug,” said Julie. “Finally, desperate, I searched Google which suggested Cyclical Vomiting Syndrome. It was like the sun coming up.
"We were referred to the Sick Kids where Josh underwent countless tests including blood, MRIs and a barium meal.
"After these were all clear they finally confirmed the CVS diagnosis.”
But the relief of finally having a diagnosis was cut short, when the family learned that the condition was incurable.
“It was devastating,” said Julie.
In the years since he was diagnosed, Josh’s condition has worsened and the family are now forced to go to hospital every six weeks for treatment.
"Josh has tried lots of different medicines to try and stop his episodes but nothing works,” said Julie.
She added: “It feels never ending. Once Josh's episode starts he is taken into hospital for IV fluids and anti-sick medication.
"During his episode, he has excess saliva and often can't talk for up to two days. It gets to the point where he is vomiting blood.”
And life with a debilitating illness has started to take its toll on Josh’s mental health as well.
"When he was young and couldn't talk, we would use notes on his phone to communicate and he would type "I'm sad",” said Julie.
"He often asks, "Why me? Why do I have this and other kids don't?"
"I can see it in his eyes and it just breaks my heart."
The family have even been forced to keep secrets about upcoming birthday parties, cinema trips and holidays so as not to disappoint Josh when they are forced to cancel due to his illness.
The youngster also misses a lot of school time as a result and only attends around 75 per cent of lessons.
And with the family unsure of if and when Josh’s condition will improve, it is difficult for Julie to know exactly what the future looks like for her young son.
"The future is uncertain for Josh,” she said.
"We worry what kind of job will he be able to get that allows for as much time off as he may need.
"As he has grown up in the hospital, he really wants to be a surgeon but will he be able to achieve his ambition when he only attends school for 75 per cent of the year?
"There is hope that as he gets older, he may grow out of the condition as some children do.
"For now, we just take every day as it comes and try to really make the most of the times when Josh is feeling well."