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My 11 year old son was just diagnosed with Henoch-Schonlein Purpura

Posted , 12 users are following.

Concerned_Mom
Concerned_Mom

HI! My 11 year old son was just diagnosed Henoch-Schonlein Purpura. I am so lost and getting upset that I am not able to find answers, as I sit and watch him suffer. It seems that most doctors know of it but really haven't treated it ever before. I feel as though I am going crazy! How long does this last? Should his body temperature be going down? Should he be in so much pain that he can't even go to school. If anyone can help me out at all with any of these answers I would greatly appreciate any advice or information. When I ask the doctor I get no where but feel as though I am nuts. Please Help!

1 like, 26 replies

26 Replies

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  • Guest
    Guest

    Posted

    Yes it's quite rare. There's a Patient UK leaflet about it (hover over the Diseases & Conditions tab (above) and click H), it can last a couple of months, give him some Paracetamol smile
  • Wends
    Wends

    Posted

    Hi there, My 4 yr old son was diagnosed with HSP a few weeks ago. After 3 weeks he is just starting to come right. According my doctor and hospital specialists there is no cure and all youc an do is give pain killers.

    How is he now?

  • Concerned_Mom
    Concerned_Mom

    Posted

    Hi! My son completed 2 days of school this week! Huge accomplishment since it is the 1st time in 2 weeks. He is in less pain then he was but the swelling and rash are still around. He has swelled this week in places I didnt know could swell.
  • Wends
    Wends

    Posted

    Great news! My son has just gone back to kindy this week also - after 3 weeks.

    So nice to see him happy again.

  • DiDi
    DiDi

    Posted

    Hi, Another worried Mother here. My 9 year old daughter has hsp for a week now and she is just coming around. What about school ? Do you think she will be out for long?

  • Wends
    Wends

    Posted

    Hi there, my son was off kindy for 3 weeks. it literally took this long for him to feel strong enough to go back. I would suggest not sending her back until she has fully recovered as otherwise she may relapse?

    Hope she recovers soon.

  • Concerned_Mom
    Concerned_Mom

    Posted

    We are ending week 6 currently, and my son is still not able to complete a full day of school. We pulled him out for about 2 weeks. It is like being stuck between a rock and a hard spot on what to do. He is 11 and just started junior high. We really dont want him to get to far behind, but we also dont want it to hinder him. His spots are mostly gone, he did get a few more last week, he is still getting the swelling of his joints, especially back and feet. The minute he does anything active though he is back down for a couple days. Good luck with your daughter.
  • WallyMcDonald
    WallyMcDonald

    Posted

    Overall prognosis is very good with most children making a full recovery but the only treatment i am aware of is painkillers.

    Good luck.

    Wally

  • DiDi
    DiDi

    Posted

    wow, six weeks. I thought she was getting better but she is down again. The doc is pushing for her to go back but i dont think she is ready. I tend to think school can wait, her health won't.

  • BJ
    BJ

    Posted

    My daughter was diagnosed a year and a half ago when she was 2 years old. Five days in the hospital cause they didn't know what it was. Rash, swelling, severe pain, vomiting... Basically, Ibuprofin and nausea medication is all you can do. However, I need help as well... Has anyone experienced any long term effects from HSP? I think my daughter just might be! She's hyper crazy a lot and was the perfectly behaved child before we went into the hospital. I wonder if she still might have pain or nervous or neuro issues from this. Is it possible?
  • Wends
    Wends

    Posted

    BJ - I have not heard of any other side effects aside from possible re-occurance in the future. is it worthwhile having her checked out? it's such a crazy, scary disease.
  • Concerned_Mom
    Concerned_Mom

    Posted

    Hi Didi,

    If you are able to keep your daughter at home, I would definately do that. You know your daughter best. Our doctor has been very supportive and letting us make the decision while backing us. My son is now going on week 7, no spots just swelling, we go back tomorrow for more kidney tests. BJ- If you find anything out about lasting effects please let us know. Good luck to all of you!

  • DiDi
    DiDi

    Posted

    SPOTS ARE BACK!!! It's like it's starting all over again. Did this happen with you? This is the start of her third week. Good luck at the doc's.

  • BJ
    BJ

    Posted

    Yes, I think they will come and go till its over. sad
  • DiDi
    DiDi

    Posted

    ok, i didn't expect it come back. Thank you all for responding to my slightly frantic posts. Glad ye are here.

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