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Henoch schonlein purpura

(8 Posts)
Everincreasingirth Mon 24-Feb-14 17:41:29

Any help gratefully received- my son was diagnosed with henoch sconlein purpura last week and admired to hospital with swollen joints ( couldn't walk) and a non blanching rash. He was quite well in himself but since then has had episodes of abdo pain which was relieved by simple analgesia, however the rash is getting worse and has also developed swelling to some finger joints though the rest of the swelling has gone down. I googled the illness and I have now frightened myself silly over possible long term kidney damage. No one I know knows anything about this illness. Does anyone have any more information? Thank you

specialmagiclady Mon 24-Feb-14 19:52:50

My son has it too! Not admitted but basically immobile with pain and a rash. Your discharge letter from hospital should have instructions to the GP to give him weekly urine and blood pressure checks for about a year to try and catch kidney damage, which happens in 30-70% of cases. (So quite a lot but by no means all).

It's awful isn't it. I hate seeing my bouncy 6 year old struck down in this way. He's being fantastically brave and cheerful as long as he doesn't have to move.

Spookey80 Mon 24-Feb-14 19:58:59

I had this as a teenager and was very unwell. If his rash and other symptoms seem to be getting worse I would suggest getting him looked at sooner rather than later?
I have no lasting effects now though.

FrazzleRock Mon 24-Feb-14 20:17:35

My DS (4yrs old) had this in October last year. Went on for AGES. He had the rash to begin with, then was vomiting for about 10 days solid and lost loads of weight. He couldn't even keep Calpol down so we had to administer paracetamol suppositories. Not fun. Then the arthritis started. We had to push him around in a pram for about three weeks, during which time we had to rush him to A&E as blood was pouring out of his bottom sad That was terrifying! It calmed down on it's own with about 24 hours.

We had to check his urine daily for a couple of weeks, then once a week for protein and blood.

He still gets achy legs now and again and the odd tummy ache. The spots sometimes come back on his ankles when he's been swimming, maybe cold? But he's fine. Just takes a long time for the body to pick itself up again.

FrazzleRock Mon 24-Feb-14 20:19:36

Meant to say, I hope your DS makes a speedy recovery! I was told my son had it quite badly.

I found this FB group really useful

goosey123 Mon 24-Feb-14 20:53:52

Hi. sorry to hear you're going through this. I also remember terrifying myself with Google. dd had this last year as she turned 5. I'd say from symptoms starting to ending took about 3 to 4 weeks, but much of the time she was well in herself, and didn't miss much school.

When i saw Dr in a and e he said to expect spots to get worse before they got better. I'd say that was true, but started clearing after about a week. I went back to gp loads of times, to reassure me.

What helped me was how reassuring doctors were. Although it was important to watch kidney function, they all seemed to say that most cases in kids were uncomplicated. My understanding was that incidence of kidney problems was lower than previous poster said, but can't remember exact number.

I've been on edge since but she's mostly been OK, touch wood, just one bout of hurting joints after an infection, and the odd spot. Hope things improve soon.

specialmagiclady Mon 24-Feb-14 21:52:40

I'm worried that we're going to get the vomiting. He has had a very so tummy, but no sick yet - touch wood. He wouldb't be able to sit up to do it in a bucket.

Hmm... Might sleep in his room a bit more.

Everincreasingirth Tue 25-Feb-14 10:01:15

Thanks for all the responses. Hope all the children with this at the moment are back to normal soon. My son is fine in himself for the most part but still waking at night asking for medicine for tummy pain. He is at the older end to get this I believe ( he is 11) which I think makes is slightly more likely that there may be some kidney problems as a result but it's really reassuring to read that most children are not affected long term. Thanks again

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