I was called to pick up Lewis, my ten-year-old son, from school because he had a headache. He said he didn’t feel well, so I gave him some Calpol and put him to bed early. I checked on him during the night, and he seemed okay.
The next morning, he woke up and said, “Mum, there is something on my leg!” He had one non-blanching spot with a red area around it. He also had a temperature. I gave him more Calpol and rushed him to the emergency department (ED).
We were seen quickly. The staff asked if he’d been bitten, as his ankle looked swollen. Blood tests were taken, and at this point, all his observations were normal.
We were moved to the children’s assessment unit while waiting for the blood results. More of the rash started to appear, but Lewis seemed fine in himself and was playing on the Xbox. He was diagnosed with HSP (Henoch-Schönlein purpura) and sent home.
At home, Lewis’s temperature spiked again. I looked up another trust’s guidelines on non-blanching rashes and HSP. I had a feeling something wasn’t right, so I took him to a different hospital.
We started again in the ED. Lewis was still relatively well. He had more Calpol, and his temperature came down, but the rash had now spread to his arms. The doctors still believed it was HSP. They took more bloods and sent us to their children’s assessment unit.
By this point, I was really concerned. I showed the doctors their own clinical pathways and reminded them that, although Lewis looked okay, he had a non-blanching rash and a temperature. He was given a dose of intravenous antibiotics in case it was meningitis.
On the ward round, the doctors said it was an unusual case of HSP but believed that was still the most likely cause. They decided to keep Lewis on antibiotics until the blood cultures came back.
When we left the hospital, I felt relieved that Lewis was still okay. I was told to return if he started vomiting bile. As we were leaving, he had a bad stomach ache, which I assumed was a side effect of the antibiotics. I slept beside him that night. He vomited a few times and complained of a terrible headache. I gave him more pain relief and almost rang the hospital again - but then he fell asleep.
The next morning, I received a call from the hospital to check on Lewis. They said something had grown in his blood culture and asked us to come in so they could explain.
When we arrived, we were ushered into a side room. They told us Lewis had neisseria meningitidis. He had a full neurological examination and a long line inserted for the rest of his antibiotics. After that, we were allowed to go home again.
Lewis’s rash was on his legs, arms and nose. He had a headache and a temperature, but he remained active and was still playing.
I’m so grateful to be writing this story. I know we were lucky, and things could have turned out very differently.
HSP and meningitis do share some symptoms. That’s why it’s vital that hospitals follow strict guidelines when dealing with rashes.
I’m incredibly thankful for the support I had from friends and family when I kept asking, “What should I do?” I truly believe that if I hadn’t trusted my instincts and taken Lewis back to hospital, he might not have been here the next morning.
Always trust that gut feeling. I’d rather be wrong lots of times and be checked and reassured than not go at all.
Lewis had antibiotics for seven days and a hearing test. His rash scars took about two years to fully fade.