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10yr old newly diagnosed with HSP

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grneyedgrl74
grneyedgrl74

My daughter has recently been diagnosed with HSP.  Although her rash has almost completely disappeared she still has small flare-ups at times and swelling almost daily in her legs.  She continues to do as much as she can but has had to stop  dance and Tae-kwon-do for now.  She is now on every other week kidney follow-up instead of weekly since she has had normal ranges.  My biggest wonder is:  Has anyone experienced extremely sore nose and bleeding from having HSP??

0 likes, 11 replies

11 Replies

  • rosalie02
    rosalie02 grneyedgrl74

    Posted

    I'm so sorry to hear this! My son's flare ups & blood in his urine is now gone also, but his legs and feet continue to bother him in the middle of the night. His nose was sore during his first flare up...and he had a few nose bleeds as well. Very odd alhough I'm glad to hear he's not the only one. He also has these rare blotches that appear on his forehead (only in the afternoon/evening) I read somewhere that the "facial swelling" is a sign of exhaustion from their daily activities. He's only 5 but he's in Kindergarten, so I can understand the "stressful" day. Sending prayers your daughter's way!!

    • grneyedgrl74
      grneyedgrl74 rosalie02

      Posted

      Thank you so much for sharing your story! I'm very sorry for your son having this terrible thing! I am relieved a bit to know she isn't alone with this crazy nose stuff going on and the rash thing on the forehead is from the steroid she was on.  Maybe this is also what is going on with your son? The swelling makes a lot of sense as this is a difficult thing for their body to go through.  Thank you for your prayers! Sending prayers back your way! smile

  • ashley54114
    ashley54114 grneyedgrl74

    Posted

    I have hsp I was diagnosed November 2015 I am 32 years old I still have bad flares, nose bleeds, blood clots, rashes on my legs and arms, affected my tyroid, killed my kidneys which now I am on dylasis, super bad joint pain, and severe stomach pain.. all from hsp, list goes on, it's so frustrating

    • grneyedgrl74
      grneyedgrl74 ashley54114

      Posted

      Ashley, I am so very sorry to hear of your symptoms and difficulties its caused you.  It's quite amazing to me that none of the Websites for HSP say anything about the nose being involved at all! I can only imagine how frustrating this is for you.  Are you able to work with having all of the complications?? My daughter also has very bad stomach pains every day and it really scares me as I wonder if she could be developing complications to her stomach or bowels or kidneys even though her lab results came back normal. rolleyes  ....Sending prayers your way!

    • ashley54114
      ashley54114 grneyedgrl74

      Posted

      I can't work, and also can't be around many people as I can get infections really easily. . I am a magnet the doctor said

    • grneyedgrl74
      grneyedgrl74 ashley54114

      Posted

      I'm so sorry to hear that. I can only imagine again how difficult that has to be for you. Are you taking extra zinc to help boost your immune system some??

  • lucynewas
    lucynewas grneyedgrl74

    Posted

    Steroids are usually only used if the kidneys are affected because they can cause a type of diabetes.
    • grneyedgrl74
      grneyedgrl74 lucynewas

      Posted

      My daughter had to take Prednisone for a week to calm her hives before we knew she had HSP. Her rheumatologist told me the acne type breakout is most likely from the prednisone. However, Prednisone is not something they have found to be helpful unless kidneys become involved like you said.
    • lucynewas
      lucynewas grneyedgrl74

      Posted

      Interesting you mention acne - Lauren's had a severe breakout too - independent of steroids. Wonder if it's related to hsp?

    • grneyedgrl74
      grneyedgrl74 lucynewas

      Posted

      Please forgive me for taking so long to get back to you on this.  I have been so busy lately.  Zoey still has breakout on her forehead.  I think drs are really learning as us parents are the ones sharing with them all of the different symptoms occuring from having HSP.  I don't believe the doctors have a clue as to how long this thing will last or how much of the body will be affected by it.  This is my conclusion from having taken Zoey back and forth to doctors and hospitals and getting the same answer that it should only last  a few weeks max 2 months unless kidneys become involved.  I don't buy this!! She is still not well having stomach pains and low back pains daily, swelling still in her feet, ankles, and knees.  Constantly feeling nauseus. sad She was diagnosed on August 17th with symptoms beginning on the 8th  of August. So 2 1/2 months later we are stilling having issue on a daily basis.  She has missed 9 days of school thus far and pushes herself on a daily basis to make it because she LOVES school and Hates to miss out, but there are days she just can't make it.  I hate not having a way to make her feel better. How is Lauren doing today?

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