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HSP going on 2 months

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christina01500
christina01500

My 8 year has been diagnosed with HSP...February 24th he had strep followed with a red rash covering his lower body, he was misdiagnosed with scarlet fever. Fast forward to now and we are on number 6 with outbreaks and they are getting worst and now they are literally covering his entire lower body and moving up to his higher extremities. He has had a second urinalysis with the the first showing proteins. Now we have blood and proteins in his urine. He is not complaing and handling it well, wish o could say the same. I am lost on how to handle this. His every other week doctors appt has moved to every week. Thankfully his blood pressure has remained in normal range. What is next? I am extremely worried and scared..

0 likes, 6 replies

6 Replies

  • harleycw
    harleycw christina01500

    Posted

    What are they giving him for treatment.  Early prednisone is correlated to better outcomes. You can google it.  Also could be an allergy to something he became allergic to so be careful and track what he eats, especially if it is reoccurring.   Mine came on after sore throat initially also and I kept having repeats, but Prednisone worked pretty well for me until I also figured out I had developed an allergy to something I was not allergic to before.
    • christina01500
      christina01500 harleycw

      Posted

      Doctor has us going in every week now for tests he just keeps having outbreak on top of each one. I have him on Benadryl daily with Motrin for swelling. I have also started using essential oils for an immune booster as well as tea tree oils for ones that open. He bathes nightly in them. He had some appear in his privates and they itched so I used some lotrimin and cold packs and it cleared in two days in that area. I am desperate at this point.
  • paula02110
    paula02110 christina01500

    Posted

    Hi Christina, my grandaughter was diagnosed at the beginning of March, with severe rash and swelling, which affected every joint, even her head and face, she couldn't walk for nearly 2 weeks due to the pain, and swelling, also blood and protein in her urine, we were beside ourselves with worry, we had to carry on a blanket to move her , I can understand completely how you feel, and I just thought i would reply to tell you, just when you think you can't take it anymore, it does just go away, which it did with my grandaughter, so hang on in there, it will subside, also when my grandaughter, got better my other little grandaughter got it, luckily not the pain. So keep strong.Paula

  • beth92856
    beth92856 christina01500

    Posted

    There is light at the end of the tunnel Christina. First of all I'm really sorry to hear your son has been diagnosed with hsp. I suffered hsp from October 2016 until late feburary 2017. I never thought I'd see the day where I'd be able to show my legs AGAIN without having hideous purpura neither did I think the pain of the joints and kidneys would disapear. Things gradually got worse for me from October meaning December was almost all hospitalised. Please rest. Time off school is needed if so and no stress. I was Urinating nothing but blood, on crutches and couldn't stand at one point and now I can go out at weekends with my friends and family and attend school. Even though this year I haven't been able to keep up to date with my studies and unfortunately sitting no exams my health came first and it took me a while to realise that which is probably the reason why I had became so so I'll. Take care and try not to stress. I promise you things will get better.

  • christina01500
    christina01500

    Posted

    Unfortunately his ankles have started to swell, I started treating his symptoms as they appear. He soaks every night in Dead Sea salt, tea tree oil, theives and coconut oil. Seems to help as the swelling had subsided in a few days. He has spent most this week with no new outbreaks until this morning when he woke up with a full blown outbreak. His pediatrician has referred us to a children's hospital in New Orleans to see a specialist because he is still having trace amounts of protein and blood in his urine. However the blood tests keep coming back normal. His doctor feels it is time to see a urologists as he is worried about his kidneys. I am starting to plot outbreaks and am starting to notice that he has them when it is time to exchange custody with his daddy. All that I have read states that auto immune diseases can flare up more during high stress. Any ideas?

    • harleycw
      harleycw christina01500

      Posted

      O.K. seriously go do the googling of the HSP studies and prednisone.  Early usage leads to better overall outcomes.  I believe I stated this earlier but don't see a response where it was addressed.  At this point with all the complications I would STRONGLY recommend you print out the studies and their correlations using prednisone and handing it to your doctor.  U.S. doctors are not great in understanding and treating HSP.  I eventually saw a allergist/immunologist but at a pretty reputable hospital and he knew HSP and kept me on prednisone on occurrences.

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