HSP - 8 year old daughter -14 weeks of rash and still more!

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My daughter (8) screamed with pain 3 nights in 1 week with joint pain in legs, she couldnt walk - but was OK in the mornings - we wrongly put this down to 'growing pains'. Then 4 weeks later she came out in a badly swollen HSP rash on her legs, bottom arms and torso (much fewer on torso and arms), the following week her joints swelled on wrists and ankles and then we had 2 nights the next week in Hospital as she vomited, had major stomach cramps and very bloody pooh. The consultants scanned her for twisted bowels but luckily she was OK and her bowels returned to normal within the week.

Since then we have had blood in her urine dipstick samples most days, luckily only a trace of protein on and off and she has been pretty well in herself. We have seen a gradual decrease over the last 14 weeks of amount of blood in her urine and aggresiveness of her rash - down now to new rash only appearing every few days on the front of her lower legs.

For people at the begining of HSP symptoms, it may be useful to share my 'HSP Rash experience' - my daughter's rash appeared on day 1 as swollen red bite like spots (like allergic reactions to loads of mosquito bites), then day 2 swelling goes down leaving big red spots, day 3 turns to a purple bruise and day 4 brown bruise then that one has gone - although already it had been superceded by many new different ones at different stages of this 5 day lifecycle! As the time passed for my daughter, the rash has become smaller red spots (bit like flea bites) and minimal bruising. I continually had to remind myself that even though it looks really horrific - the rash on the skin does eventually go and isnt in itself dangerous or permanent.

This is a very worrying illness, and I would like to send my best wishes to anyone else suffering from HSP. Apart from our hospital stays, the worst part for me so far is coping with the mental torture of yet more spots every day and the worry about potential ongoing health issues that are reflected by other HSP sufferers on this excellent site (thank you all for contributing as this has really helped me through HSP). I am hopeful that very soon my daughter will be symptom free from HSP - however, until then we will continue with 'spot checks' and 'dipsticks'.

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  • Posted

    Just a reply as my 8 year old son got HSP last year and it totally terrified me. Like you we put it down to growing pains at first then his hand was swollen, but again i put it down to him being a rough and tumble kind of kid. He also had a rash on the back of his legs but it had been hot so thought his school trousers had caused it. Anyway the next night i went to put him to bed and was horrified to see his lower legs were swollen and he had large red/purple blotches. I took him straight to hospital and they ummed and arred so much that i was thinking \"oh my god they dont know whats the matter with him\". Anyway the order of events is a bit of a blur now but the bad stuff lasted about 6 weeks, in and out of hospital. He couldnt walk for 4 weeks and stayed in bed with me. I thought he was getting better, then his testes swelled up very badly and then his face! That was scary, hhe woke up one morning and his face was so swollen that he panicked because he couldnt see! All i can describe it as is a huge fat face with little slits where his eyes should of been! It was so hard to not look petrified myself but he was brilliant, bless him, he took the mick out of himself and said he was a baked potato head! He had never been ill before, nothing serious anyway, but this terrified me! He's had blood tests for allergies, but they couldnt figure out why he was swelling up.

    I was pretty much in the dark when he was in hozzy, it didnt give me much confidence in the system as it was very apparent that the hospital didnt really know what they were dealing with. They had to look it up on the web as i did and ithink what with all the different docs dealing with him i was more of an expert on it. Up until the final stay in hospital i had had little info or reassurance. Then one doc sat me down and had a long chat about it, he seemed to know what he was talking about and gave me peace of mind. He even done extra blood tests to reassure me.

    The only meds they gave him were paracetamol and extra strength ibuprofen which in the end totally irritated his stomach.

    Anyway enough about me! I genuinley wish your daughter and you a much more pain free and relaxing summer,you have both been very brave dealing with the agonising pain and uncertainties.

    Just another thought, had you heard of it before and were people as miffed about it as my freinds and family were. Alot of explaining was'nt there?

    Oh and the strange thing was that exactly 3 months after getting it his mate got it (very mild) and he was the only visitor his age he had had.

    Take care and best wishes xxxxxxx

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  • Posted

    jag100

    i totally agree with the mental torture this disease creates. My 6 yr old has HSP and we are 10 weeks in...and the rash is still going strong. The swollen joints have stopped since January and the awful abdominal pain is thankfully over! However, like you i urine dip every few days to still find high levels of blood (which my hospital are not too concerned about) and +2 protein. My daughter has lost lots of weight and still is incredibly pale.

    At times areas of skin puff up and go down the following day. My hospital described it as a leaky disease...the blood leaks around the body causes the rash and the fluid causes the swelling, the kidneys leak protein into the urine.

    I can't wait for the rash to go, i dont think people realise how upsetting this horrible disease can be. My daughter has now returned to school for a few hours a day, she becomes quite tired and i'm scared stiff she will fall over and hurt her legs but she is desperate to play out.

    I'm glad your daughter is better i'll be glad to see the back of it!!

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  • Posted

    Hi Jo72

    I am so sorry you are having to go through dealing with HSP too, and wish your daughter a full recovery very very soon.

    My daugher is just about to turn 10 now (the second anniversary of HSP outbreak), and was signed off by the kidney specialist last Sept - but she will still have to have check ups with the paediatrician annually to keep an eye on those kidneys.

    In total, her rash lasted 26 weeks (but the rash did get less horrific before eventually clearing completely in that time). Then she had two little break outs after she got a sore throat over the following 6 months (but for very short periods - i.e. 5 days of really minor rash each time). She didnt have any reoccurence of the leg pains or the stomach cramps at all (I think that tends only to be a symptom in the first month).

    She had blood and protein in her wee wee for just under 18 months, but nothing since last September thank goodness. Now I only test her every three months or so - just to reconvince myself she is fine, and she is clear so far.

    I know what you are going through, and sympathise - it is a horrible and scary time. Just focus on seeing those lovely rash free legs... they will come, although it's difficult to believe it whilst the active phase is with you.

    All my love and best wishes - stay strong! JAG100

    xxxx

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  • Posted

    By the way - I do recall going to pick my daughter up from school every afternoon and fearing seeing pressure swollen rashes from where she had been rough and tumbling. And she did get swollen skin - and rashes around knocks and bruises - but she was happy, and the swelling and rashes just disappeared as per the cycle - so my view was, just let her play & stay happy. She was also very happy as the school let her wear her Crocs (plastic shoes), as her school shoes caused her to get swollen red feet.
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  • Posted

    Hi

    Many thanks for your kind reply. Within the last week her rash has become very faint, so fingers crossed. So glad your daughter has fully recovered what great news!

    I'm looking forward to it myself x

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  • Posted

    My 5 year old daugther was diagnosed with HSP 3 weeks ago. We were in the hospital 2 nights bc she couldn't keep anything down or expel anything. After being able to keep things in and clearing the obstruction in her bowel, we were released. That very night, the rash started again, this time much worse than the first round. Not only has it spread from her legs and bottom, but now on her hands, arms, and face. She started Flo-Pred, a steroid, yesterday and woke up this morning with her eyes so swollen, she couldn't even see. The pediatrician put us on 2 doses/day of Flo-pred and although she can open her eyes now, it looks like she has 2 red/purple eye sockets. Her stomach seems to be fine and her urine tests are coming back normal, but I'm very worried about the swollen eyes and rash on her face. Does anyone have suggestions on what to do to ease the pain, e.g. elevate head during sleep, etc? Also, it seems when she is playing with a friend, her mind is taken away from her pain but afterwards, when she is settling down, the bruises around her feet are worse. Any advice or suggestions on if I can control this at all? My parents keep telling me she needs to stay off her feet and rest but for a 5 year old, that is hard to do. Any advice/help/suggestions is greatly appreciated.
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  • Posted

    My daughter didn't get swollen eyes, but looking back at photos her eye sockets were darkened, and her skin translucent looking. I think your parents are technically correct in what they say re: rash being lessened by resting - but if you can accept that the rashes will get worse through being active, and will look bad - but importantly, will have no long term impact in your little girls health - then I recommend keeping her active and happy - try and carry on as normally as possible. Remember, the major long term problem is kidney involvement - everything else is short term upsetting, but will get better. Best wishes to you and your daughter. NOTE: just check Internet for side effects of your steroid - just in case that may have reacted badly rather than the HSP.
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  • Posted

    Thank you jag100. Urine tests are coming back normal for now. Is there a home dip test I can use? At this point, it hasn't been needed as we've been to the doctor 5 times and the hospital 2 nights over the last 3 weeks, but I'd love to find out if there is one I can use at home.
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  • Posted

    We got a pot of test strips prescribed at the hospital by the consultant, they can be bought online - they are expensive tho. GP wasn't able to prescribe due to cost. Ask you paediatrician.
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