My 5 year old has been suffering with Henoch Schonlein Purpura for the last 12 weeks. Thankfully she is over the worst of it now (fingers crossed). It was v. bad, her feet legs and bum turned into a mass of black blood blisters, that were really painful when they were ready for bursting, there was no 'normal' skin visible on her lower half. She couldn't walk because of the joint swelling which effected pretty much everywhere. The rash covered her whole body right up to the tops of her ears - bless.
After several trips to A& E she was admitted to Childrens Hospital for a week - morphine helped pain, but the itching was intense!!
In the end we were given a sedative that also helps itching and that saw her through the worst of it.
She's now been back at school for two weeks and is doing really well, although the rash is still on her back and legs and a lot of her skin is scarred.
The next worry now is that her kidneys, that weren't to badly effected initially, are still losing blood and protein. We keep having her sample dipped, but although the amount of blood and urine is increasing the doctors just keep saying 'don't worry - we'll test it again in a few weeks'.
Does anyone know how this problem with her kidneys may be effecting her? And does anyone have experience of a reoccurence of the rash - will it be milder? Any experience appreciated - good or bad I guess .