Sophie's Story, Aged 4
Diagnosis
It was a normal Friday in November 2011, Sophie had been at Preschool, we came home had lunch and then set off for her swimming lesson. There was absolutely no signs of anything going wrong. I got her changed and noticed there was a purple rash appearing on her legs, it had a somewhat raised appearance and while she wasnt complaing it was painful, she didnt want me to touch it. We went straight to Accident and Emergency 10-15mins away, by the time she got out of the car, she was unable to walk. The Dr examined her, and told us she has Henoch Schoenlin Purpupra. He gave us some written information on it and basically told us it could last up to 6 weeks, common symptoms associated (vasculutis, joint pain, abdominal pain...) and to treat with Paracetemol and Ibuprofen (we were later told not to treat with Ibuprofen as it induces bleeds with HSP children). The Dr skimmed over the rarer side effects which he assured us was unlikely to happen. We were sent home, and Sophie coped very well with it. The vascultis spread from her feet to her bottom, and her arms, her hands and feet became very swollen. She had days of being completely immobile and days where she could walk with assistance. Things went on like this for about 2 weeks.
Abdominal Pain and Sickness
Sophie went off her food and began vomitting a few times a day. She was still able to tolerate fluids and minimal food. Things graduallyy got worse and we took her to the childrens hospital every second day because we felt something just wasn't right. Every time we were sent away telling us that this was part of her condition and to basically treat it at home, there was nothing they could do for her. After 4 failed hospital visits, her condition deteriorated dramatically. She was very lethargic, fluid intolerant, could not keep her medicine down, she was very pale, almost grey. So she was finally admitted. The put her on IV fluids, gave her paracetemol rectally and anti sickness meds. Every venflon she had in tissued due to the poor state of her veins, she was still vomitting, she didnt sleep at all because she was so uncomfortable. At 4am, we were sent for an x-ray. At 11am we were sent for an abdominal ultrasound. The ultrasound tech looked at the screen and looked at my emaciated daughter, and I knew right away something was wrong.
Intussusseption and Surgery
As soon as we got back to ward, the Dr that continued to send us home insisting nothing was wrong, told us that she would be transferred to another hospital by ambulance for emergency surgery to correct her bowel. She has an intussusseption, one of the rarer side effects the original Dr skimmed over with us. In the meantime she would be recieving emergency medication fluids, antibiotics and other things that I was just too upset to take in. Bags of fluids that usually last 4 hours were being pumped into my child in 20min. And still, she just lay there, no fight, no energy, vacant eyes. Within 30min of arriving at the other hospital, Sophie was under general anaesthetic and being operated on. We were told to get a coffee and wait in the ward, she would be back in around an hour. 5 hours passed, no answers, then the surgeon came in and shut the door and told us to sit down. Thinking of that moment still terrifies me now. He said our daughter had to have her bowel resectioned and reconstructed due to the intussusseption turning necrotic because it was left untreated for so long. He told us that she had to be assisted in her breathing during surgery due to getting into difficulty. Her appendix had to be removed because the necrotic tissue adhered to it. He told us she was a very lucky little girl. We had come so close to losing her. She managed to wake well and thankfully avoided the High Dependency Unit. She came back to us with a nasogastric tube and bag, needle in her arm, needles in her feet, she was catheterised, on Morphine, and of course, a wound on her tummy. She was still