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9 Yr Old Recently Diagnosed with HSP - What Type of Specialists Have You Seen?

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carrie98378
carrie98378

My 9 yr old was diagnosed 2 weeks ago. We initially took him to an immediate care who sent us directly to the ER due to the swelling and joint pain. Once diagnosed, were followed up with his pediatrician. However, the protein and blood levels have continually increased. We are working on finding a nephrologist but many of you have mentioned seeing "specialists." What types of specialists have you found most helpful? Unfortunately most of the physicians we have talked to have very little experience with HSP.

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3 Replies

  • ashley54114
    ashley54114 carrie98378

    Posted

    nephrologist is the main one to protect his kidneys, mine don't work anymore so I have to do dylasis. . Make sure you go to a larger hospital. I go to fredort In Milwaukee. another good specialist is a reumatologist they keep track of the hsp and put you on the appropriate drugs. You definitely need a good general doctor close to where you live, because it can be very painful at times... me personally have been to the er multiple times for severe pain and then would get admitted. you can get blood clots very easily with hsp, and keep your house very clean, and have him wash his hands alot, because our immune systems are down, we are like magnets to anyone that is sick..

  • pelhamed
    pelhamed carrie98378

    Posted

    Hi Carrie,

    looking back at how things developed with my son I think the best would have been to see a reumatologist and nephrologist if there is any kidney issues.

    His pediatrician is pretty hands on and did a good followup throughout the process

    We also saw countless doctors at the ER that had no clue and kept discharging him, to be back the following week. One of them even suggested he was faking the pain. The GI was ok, but probably not the best option. We also saw a doctor that specialized in pancreas issues who was the only one that suggested to see a reumatoligist.

    The smaller hospital close to our home was also a bad option. I recommend a large hostpital. We ended up both in Boston Childrens hospital and Mass General, both of them had experience with HSP and got things under control pretty quickly (relatively speeking, the whole ordeal took about 6 months).

    If you are curious my son recovered fully

    Best of luck

    Ed

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