4 year old with HSP, any advice welcome

My 4 year old son has been diagnosed HSP on december 6th. We too had a week full of worries. I don't think I can give you very usefull advice yet, but we can at least share experiences.

My son seems to have quite a mild version so far.

He has pink or light red coloroured spots on arms legs and bottom. His lower legs are now blue, looks like big bruises. Every now and then he's suddenly quite tired, and looks very pale. But after some 30 minutes rest he's ok again. He does complain about pain in his ankles, mostly in the morning. I've seen him jumping around on one leg, or even unwiling to walk at all, but 15 minutes later he runs around again.

His urine is being checked twice a week. It's ok so far. His bloodpresure is fine too, and also no abdominal pains.

He went to school for 3 hours today, and even wanted to go longer.

Furthermore he has those little painfull wounds in his mouth, he always gets those when he is sick, as does his father. His general immune reaction seems to be a bit low at the moment.

One more thing I wanted to share is that he has been complaining about pain in his legs for weeks before. We did not take it very seriously since he tends to be a bit lazy and complaining, but after all it might ave been a sign.

I hope ypur daughter will be feeling better soon!

(I'm sorry for my poor english, I'm dutch)

Hi

My 6 yr old daughter started with a rash in Nov 11. Luckily my GP knew instantly what is was. Within a few days my daughter's joints became swollen and she could hardly walk. This resulted in our first visit to hospital where she was given medicine to reduce the swelling. After a couple of days the abdominal pain started this was the worst part, she refused food barely drunk and couldn't stand any noise. She spent most of her time in bed being sick resulting in green bile. This meant our 2nd visit to hospital and again urine was tested. We returned home that evening once the sickness stopped. This continued for several days - joints hurt followed by abdominal pains. At Christmas her protein levels were +3 so the hospital took blood....it is now the end of January and i regularly test her urine the joints do not swell and the sickness has stopped. she now attend school a few hours a day but is very pale and the rash is still awful. We are 10 weeks now into this awful disease. I can't believe it last so long having read it usually last 6 weeks! I hope it ends soon and i never see it again!!!

Hi my 5 year old daughter developed HSP on Dec.22 and we are now in week 10. Like others it started with pin prick red spots on her legs and the next day she had what looked like brusing all over her bottom. She then developed joint pain and was unable to walk. Luckily our GP diagnosed HSP straight away. 1 week later she was doubled over with tummy pains and was passing blood in her stools. She was hospitalised at this stage as she was getting dehydrated and she was started on steroids. By week 4 she was showing 3+ protein in her urine and likewise blood. She had at this stage also developed rash on her legs, arms, face - even her ears. And they were itchy... After 3 weeks in hospital she returned home in good form but still on steroids and with blood 3+ and protein 3+ in her urine. She is back at school now (week1o), and while I felt the rash was burning out last week I am quite dismayed this morning to see it is back - she has caught a cold and has a low temp. She is attending hospital for her kidneys, we are dipping her urine daily, and she attends the GP weekly to have her blood pressure checked. She is scheduled for a kidney biopsy in 3 weeks time. This really is a stubron illness sometimes I think it will never burn out and I worry so much about her kidneys.... I know other peoples experiences can be easier (and some more difficult) but for all of you I hope it passes quickly and without lasting effects.

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