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HELP!!

Posted , 4 users are following.

Lindsay831
Lindsay831

My 9 year old son broke out with the classic hsp rash six weeks post open heart surgery. He had a bad case of rash over 75% of his body. The week after the rash he started spilling protein. 2 weeks after that protein was so high they did kidney biopsy he had 40% loss of kidney function. Currently doing cytoxin (chemo). Water retention is terrible. Doing albumin+lasix treatment weekly. Was working extremely well!! Loosing five to six pounds after each treatment making him feel great for around 4-5 days. The last two treatments have not worked and now he's gaining again. My question is do you guys think his kidney function could be getting worse causing him to retain more fluid? We are at a complete loss here! Also has extremely high blood pressure. Our doctors are perplexed with his condition as well! 

0 likes, 4 replies

4 Replies

  • HSPSucks
    HSPSucks Lindsay831

    Posted

    Hi,

    Sorry to hear about your son. My son is 10 and has HSP. They have him on a steroid which helps with the swelling and intestinal cramps. The first week of HSP he was admitted to the hospital because his feet swole so bad that he couldn't walk. Just to touch them, they hurt him. The steroid they had him on helped with the swelling.  I'm not sure what your son's case is but I would definitely ask about him possibly getting on a steroid. My son is getting tapered off the steroid now and is having more intestinal cramps and is vomiting again...we're down to 10mg of Prednisone (steroid) and his body is definitely reacting to the lower amount. Not sure what his Dr will recommend. He has had protein in his urine and has had an ultrasound done on his kidneys but so far all has checked out to be fine. I will say a prayer for your boy. HSP sucks. 

    • Lindsay831
      Lindsay831 HSPSucks

      Posted

      Thanks for the reply! My son is on 60 mg of prednisone. He's on so much medicine!! He's on 

      Lisinipril

      amlodipine

      Prednisone

      lasix

      asprin

      potassium

      magnesium

      multi vitamin 

      vitamin D

      Tums

      We just don't know what to do anymore!! He's up to 118 today! He was 92 before he got sick. Im super concerned that since the water retention is getting so much worse that his kidneys are getting worse. I just don't know what to do anymore!!

    • andre48633
      andre48633 Lindsay831

      Posted

      Hello, just wanted to know hows your son is doing ? Hope all is well .. blessings 
    • Lindsay831
      Lindsay831 andre48633

      Posted

      We are scheduled for our next kidney biopsy on the 27th. Hopeful that it will show good news!! 
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