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What to expect?

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brittany08747
brittany08747

My daughter got HSP in March of last year when she was 5. She was hospitalized for two weeks  because it caused her to have intususseption and she had 28 cm of her small intestine removed. Altogether, her HSP symptoms lasted about 4 weeks, including the two weeks in the children's hospital. 

I've been reading about these terrible relapses and I just don't what to expect. I've learned far more on this board than I have in all my tireless hours of research online. Online articles dismiss this disease as less serious than it really is. I can't find anything on relapsing. So far she hasn't had a single purpura since March. Should I expect her to have a relapse if she gets sick ? Or is it possible this disease will never again rear its ugly head? 

Thank you!!!

0 likes, 3 replies

3 Replies

  • Lindsay831
    Lindsay831 brittany08747

    Posted

    It sounds as though she had a typical form of the disease, although terribly rare and terrifying. My son has been struggling for six months undergoing chemo for kidney failure do to the disease. His was triggered by open heart surgery. He has congenital heart disease. I've heard if there is a relapse that it's generally shorter in duration and less aggressive. Good luck!! We're still battling! 

  • melissa_43498
    melissa_43498 brittany08747

    Posted

    Hi sorry for what ur daughter has been through! My son who is 5 was diagnosed last week. He has ankle and feet pain swelling and awful rash from feet to bum. No treatment just ibuprofen. I’m so worried as when he was 5 months old he had intrassupection and then sepisis. ATM his pain and rash getting worse and I’m worried the Bowel will b affected soon! I have a sick feeling. Doctors told me to follow GOSH leaflet and that this is normal!! Xx
  • kirsty53368
    kirsty53368 brittany08747

    Posted

    Hi there

    Hope your daughter is fully recovered? HSP really is shocking! We had never heard of it.

    My daughter is 6 and has had HSP FOR 3 1/2 weeks now. Please can you tell me what your daughters symptoms were for the bowel intususseption? 

    My daughter has severe rash, we are seeing a paediatric dermatologist today. She has had swelling of her forehead and eyes. She also has had tummy pain from the very start of this although this seems to be improving, she has had bloody stools for 5 days now. Her urine checks  are daily and have been fine. Will this ever end!

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