HSP may be returning for my 8 year old daughter?? Please Help!!

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Hello everyone, I'm so glad to have found this group and try to get some help and answers,as we all know that most doctors,hospitals,and nurses are not too educated about this disease!! My daughter was diagnosed with HSP when she was 5 years old! She had all the spotting,bruising,joint pain,abdominal pain,inflammation,etc etc etc.It was a very bad case that lasted about a year but luck fully did not affect her kidneys! My daughter is now 8 and has been experiencing some severe abdominal pain the last few months and about a month and a half ago she started getting patch like bruising on her arms ONLY! They come and go every couple weeks and the abdominal pain is worst when the bruising is present! She also experiences joint pain in her left foot very often ! Dozens of tests,hospitals,and doctors later no one can tell me what's wrong sad She has all the symptoms of HSP but my question is and I have read and seen by experience that the bruising and or spots starts and occurs usually on the buttocks and legs but my daughter has only gotten spots and bruising on her arms only!! They are dark red and purpulish just like the ones of HSP.For that reason doctors are skeptical to say it's HSP .Can HSP start on the arms or occur on the arms only?? Thank you all in advance so much!!

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    My daughter is five and was just diagnosed with HSP as of 07/01. Her case led to multiple hosptial admissions due to the kidney complications and respiratory issue, and thankfully the specialists I see are actually involved in studies that investigate diseases like HSP (but they know that this disease is still a mystery in the medical field). Unfortunately, I have gotten to know a lot about the known facts of this disease so I do know for a fact that bruising can occur on the arms. Our first admission team of doctors were thrown off by the fact that her arms were affected as well, but each person affected by HSP has his/her immune system and have different reactions to the disease. 

    My specialist doctors have warned me that HSP is a concern I may have to accept as part of my daughter's life for a long time due to a second flare up. Though her current treatment plan prevents a second flare up, I have been warned it could come back, but as far as previous cases have show, a secondary flare up is not as "bad" as the first time. Not saying any cases of HSP is good at all either! My two weeks at the hospital due to this illness and even the aftermath has caused some much chaos in our lives that there are days I wish that we could go back to when she was a perfectly healthy little girl last month. My daughter's treatment due to the kidney complications has led to early morning/late nights, and even sleepless nights thanks to the side affects of her high dose steroids.

    Good luck with your daughter! I hope you get answers!!!

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      Thank you so much for your response! Lots of great information and answers alot of questions for me! I'm glad your daughter has a great team behind her! It's very frustrating not having anyone on your side who knows about this awful disease ! I hope your daughter recovers in no time and thank you so much for your well wishes smile

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    Yes, my 6 yo has it all over her arms!!! I'm new to this and it's very frustrating try to get answers!

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    • Posted

      Thank you so much this helps me alot! It's frustrating knowing my daughter has this disease and they won't diagnose her because they say it's on her arms only ! This is the 2nd time we are going through thissad I hope your baby girl recovers very soon and thanks again!

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