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  3. Henoch-Schonlein Purpura

HSP almost 10 months and counting. Any advise please.

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michael_93524
michael_93524

My teenage age son was diagnosed with HSP in November 2017. The trigger was a cold with an ear infection. The rash spread around his legs and hands. The diagnosis was immediate and the hospital kept him in for three days. Thankfully the rash disappered within 5 weeks and he has not had another flair since then. We followed up with urine analysis on a weekly basis for 3 months and then monthly thereafter. Only on two occasions he showed traces of protein and that was within the first two months.He continous to show micro hematuria in his urine. He drinks plenty of water 3-4 liters a day since he plays basketball. He has cut down on the sugar and milk and eat mainly organic. Doctors say that we cannot do any treatments unless he shows protein. Does anybody have a simlar experience. How long does this take and should we insist on my son taking steriods?

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2 Replies

  • linda29209
    linda29209 michael_93524

    Posted

    My daughter got HSP at 19, which was almost 4 years ago. She has never gone into remission but the flares although constant are mild. She occasionally has traces of blood or protein but does not need any medication, just regular monitoring to make sure her kidneys are ok. Steroids initially healed the abscesses in her tummy but never did anything for the HSP flares and have awful side affects and the longer you are on them the worse the long term damage. It took almost 18 months to taper down and off them.  She tried lots of drugs. In the end a good diet seemed to help her. Avoid any medication unless a doctor says your son really needs it. Hope he improves soon. Everyone reacts differently to this condition.
    • michael_93524
      michael_93524 linda29209

      Posted

      Thank you so much for your reply. I wish your daughter recover very soon and get rid of this disease. Thankfully my son has not had another flare and the dermatologist who diagnosed him told us that he may see micro blood for at least a year. Unfortunately doctors don't say much. There concern was and remains that he does not leak protein. Thankfully there are no indications that he has . Linda you stated that your daughter follows a good diet. We have cut sugar, reduced but not eliminted salt intake - we use pure sea salt- and have significantly reduced cows milk. Any advise on diet? Thanks again.

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