Just over 7 weeks ago, my 4 year old was diagnosed with a disease (horrid word, I prefer illness!) called HSP (Henoch Schonlein Purpura).
It all began with a temperature on the Saturday, that lasted the day and night, nothing too out of the ordinary there, kids get temperatures all the time!
On the Tuesday I noticed a rash on his legs, again not that unusual as he has eczema. When I striped him off for his bath, I could tell immediately this wasn’t eczema. The spots were deep red, and not blanching! By the time I got to a & e, his legs and ankles had started to swell and bruise. By now I was really starting to panic!
The a & e nurse, said straight away she thought it was HSP, I had never heard of it! After an evening of blood tests and observations, the doctors diagnosed HSP. They explained HSP to be a disease normally caused by a viral infection, where the body completely over reacts, and breaks down its own red blood cells. The rash that is always present with the illness are the leaked red blood cells. The complications that can arise are kidney and intestine involvement. He didn’t show any signs of either, so we were allowed home with a urine test kit, and the hospital arranged home visits from the community nursing team.
I was just starting to feel relaxed, that all was going to be ok, then a few days later he became unwell with it. Other parts of his body started to swell and he was admitted into hospital. The a & e team, asked for the surgeons to take a look and perform an exploratory operation, they then referred to Great Ormond Street. By now, he was so tired and upset and up to then he had been amazing, never moaning, cooperating with the doctors and nurses. It was decided he could sleep and that the consultant and expert in HSP would look at him first thing. Luckily for us, the ultrasound was fine and things had settled down over night. He was given antibiotics, and a plan of how we could keep him comfortable at home.
It has been good speaking to people in the same position, and listening to their stories!
Since then the rash has come and gone several times, we had seen more swelling and bruising, vomiting and stomach cramps. His back was really swollen and sore, he had the rash on his eyelids, spending complete days on the sofa, even being carried to the toilet! The swelling makes the joints very sore, and mobility is limited.
We then had 10 days with nothing, until the day we were due to go on holiday, the sickness and cramps returned, his was observed in hospital as we found some blood in his vomit, again after 8 hours observation, we were lucky the blood and urine tests were okay so we made it away on holiday.
I have joined a support group on Facebook, that has been really helpful. My own GP called me to see how thing were going, and said he hadn’t seen a case of it for years. It has been good speaking to people in the same position, and listening to their stories!
We are continuing with the urine tests at home and the nurse comes out weekly. We have a consultants appointment in a few weeks, and hopefully things will return to normal.
My little boy has been amazing, I am so proud of him! He started school last week, (missed the first day – as the sickness returned) but he has just got on with it. I made sure the school were fully aware of the situation, and so far they have been great!
It’s a very strange illness, to begin with you take each day as it comes and not make too many plans, it was pretty bad timing being the first week of the summer holidays, but on the other hand he made it to school!
I will keep you updated on our progress x