Tiny’s weekend in hospital with Henoch Schonlein Purpura (HSP)

Last week, Tiny was poorly. At the start of the week she had a fever and a sore throat, so we kept her dosed up with Calpol and Ibuprofen. On Wednesday night, we took her to the out of hours doctors, when she developed a purple dot rash on her legs, which didn’t fade when pressed with a glass. The doctor said he hadn’t seen a rash quite like it before, but it wasn’t a meningitis rash, as it was slightly raised. 

We went home and continued the Calpol and Neurofen routine. The temperature was relieved in time for her first day at nursery on Thursday.

On Friday however, she went downhill. I picked her up from nursery in floods of tears. She’d been crying for two hours and nobody knew what was wrong. Thankfully, five minutes after leaving nursery, she fell asleep in the pushchair. When she woke up, it was a different story. She screamed and wailed in pain. Any mother knows the difference between a pain-cry and any other kind of cry. Tiny has never been much of a cry-baby. None of my children have. This cry was relentless and her sad little eyes were full of tears. It was heart-breaking. At first she didn’t want to put any weight on her legs. Then once she had, she refused to bend her legs to sit. Her left knee was swollen and much bigger than the right. Her left foot was stone cold, whilst her right foot was warm. She was shaking, but there was no fever. As I stroked her back to comfort her, I felt a lump next to her spine. A big lump. I panicked.

Very frightened, I telephoned 111. My doctors had shut for the weekend and I didn’t know what was wrong. They told me she needed to be seen by a doctor within two hours, but as the out of hours hadn’t opened yet, she’d have to go straight to A&E.

Getting to A&E was very distressing. Picking Tiny up made her scream even louder. Her back hurt. Sitting her in her car seat hurt her leg. She was distraught. By time we arrived, she had been screaming for an hour and a half without stopping. We were the first people in A&E. We sat there for 4 hours. We saw a triage nurse, but there were no doctors available. After 4 hours, we got moved to the out of hours department (at the back of the queue), so that the A&E could tick on their stat sheet that they had dealt with the patient within their 4 hour time constraint! When we left A&E, there were 8 children waiting to be seen. All in pain. In 4 hours, not a single child had been seen. Adults with minor injuries from a trauma incident, who were walking around eating, were being prioritised over a little boy with blood pouring out of his head and a little girl who could barely breathe. I was horrified.

In out of hours, I could feel hot angry tears pricking the back of my eyes. My poor baby was in so much pain and I was so scared for her, not knowing what was wrong. We got seen within ten minutes. I was livid about A&E. The out of hours doctor was horrified and embarrassed. He referred Tiny for hospital admission to the paediatric ward immediately.

On the ward, Tiny was weighed, given more pain relief, examined PROPERLY and given a bed. I lay on the bed with her, cuddling her until she fell asleep. We had a traumatic time trying to get a cannula into her tiny little arm. She screamed, panicked and thrashed her arms, legs, back and head. There were four nurses holding her down whilst I tried to cuddle her. The doctor was taking far too long trying to get the needle in. I was getting upset seeing such terror in my toddlers eyes. After three attempts and three puncture marks in Tiny’s hand, they stopped and said they’d try again later. Whilst I knew they needed blood samples, I was so relieved they stopped hurting her.

When later came, I was firm. I couldn’t have my baby that distraught again. She hates being restrained. It’s not the right way to go about it. I told them to line up the needle and put it in quickly and carefully whilst she was asleep. I’d sit next to her and stroke her hair. A nurse on standby to steady her hand if she woke up, but nobody was to restrain her or pin her down. My way worked. I know my little girl and this was the best way for her. She opened her eyes and she cried, but she looked into mine, held my hand and stayed calm. The cannula was in within seconds and she was back in my arms having a soothing cuddle.

After a night in hospital, Tiny then had her first Xray to make sure it was just fluid on her knee and nothing worse. Then an orthapod examined her to check there was no infection inside the knee. He was satisfied that there wasn’t. On regular pain relief, she perked up and had a whale of a time in Gloucester Royal Hospital’s fantastic playroom!

So what was the diagnosis?

Tiny has a rare disorder called Henoch Schonlein Purpura (HSP). It was caused by a throat virus, which she still has, and which caused her fever earlier in the week. HSP was developed as a result of the virus. It is an autoimmune disorder, which causes the body to attack it’s own blood vessels. This attack causes a rash which bleeds in spots under the skin (the reason they don’t fade under a glass) and it causes painful swelling of a limb, usually a leg. In Tiny’s case her knee. It is thought that the lump on her back was also fluid caused by swelling of blood vessels. It will take up to six weeks for Tiny to recover from this illness. There is no telling how long she will be in pain for, within this time period.

Hospitals have a very strict follow-up protocol for patients with Henoch Schonlein Purpura as it is vital to make sure that the blood vessels within the kidneys have not been permanently damaged. Therefore Tiny will have weekly follow-up appointments for the next six months. In extremely rare cases, HSP can cause kidney failure. I really hope that doesn’t happen to Tiny.

She is now home with her twin, who HATED being separated from her. We made a nurse cry when Fluffy came to visit us in hospital, because they both got so upset saying goodbye to each other. They were one each side of a glass panelled door, reaching for each other and screaming. It was devastating. They have a twin bond so strong it is beyond all comprehension. They really struggled with being apart for 24 hours.

We are home now. Tiny is well when the pain relief is working and goes downhill extremely fast if it wears off and first thing in the mornings. HSP does not run in families, is not able to be “caught” and is rare. The chances of Fluffy or Bunny getting it too, are extremely slim. The girls can still go to nursery and twins club. We just have to be mindful that Tiny can’t walk as far and gets tired quickly.

Who would have thought a throat virus can cause your leg to swell up?!