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My daughter got HSP 6 weeks ago, help please

Posted , 7 users are following.

hong7
hong7

rash comes and goes, joint pains, stomach pains, more concern on increasing level of protein leaked in urine, 270 . Does it mean kidney complication? Any advice? please, please please. _ a worrying dad.

1 like, 14 replies

14 Replies

  • thumbsup1
    thumbsup1 hong7

    Posted

    Hi hong7,

    I don't know how old your daughter is but anyway,.. My advice is that she will left fully all dairy milk products out of her food list (that was a huge milestone for me couple of years ago and it helped a lot). So no cheese, milk, yogurt, anything.. Also she could try to avoid wheat (glutein) if that is any possible. HSP is caused by something, which has been burdened body for a long perioid. It could by an allergic reaction for something or just a confusion situation in your body. The true fact is that the body is now has gone now upside-down (high igA levels) and that's why is very important to check what she eat (good proteins = chicken, fish & lots of vegetables & carbs = rice etc.) and how well she rest. Also you can ask from doctor if she can start a predinisolon. That could improve health process. 2-3months should be fine for that. Protein levels are bad if they go over 2-4grams per day, so no worries now. Take care.

    • hong7
      hong7 thumbsup1

      Posted

      Thanks a lot for your reply. My daughter is 6 and half years old. Her protein in urine test is 500 today. the doctor was reluctant to use the steroid medicines before doing a biopsy test on kidneys, which will take at least one week to see the result. I'm worried the best time for treatment will be missed if there has been a complication developed on kidneys.
  • jeanna91587
    jeanna91587 hong7

    Posted

    Hi there, I know how you feel about being so worried. How old is your daughter? My son got HSP when he was 5 years old. It started with a swollen elbow and then he woke up and couldn't walk b/c of his knees. He couldn't walk for days actually and my husband had to carry him around. We ended up taking him to a pediatric rheumatologist b/c he started vomiting, meaning it had affected the blood vessels in his gut. She prescribed prednisone and he took that in a tapered way for two months or so. That was the one thing that actually helped him. It was so scary and in the beginning his protein was slightly higher than expected though they thought that may have been b/c he was a little dehydrated from throwing up. The prednisone (a steroid) did make my son a little hyperactive but it was worth it to get some peace of mind that the symptoms were better. Let me know if you have any questions - I am happy to answer - being a parent it's so scary when our kids are sick, especially since there really isn't any treatment to get rid of HSP. -Jeanna 
    • hong7
      hong7 jeanna91587

      Posted

      Thank you so much jeanna91587 for sharing your experience. My daughter is 6 yr and 8 month. She has lost 2.5 kg since the illness started 6 weeks ago. I'm worried the high protein level in urine test, jumping from 270 a week ago to 500 today. Will have to go a Renal Biopsy then the doctor will decided whether medicines such as Azathiopine or Prednisolone will be used. 

      My daughter is very sensitive girl, she got a lot of stress when the rash and pain goes and comes back. 

    • tinbed23
      tinbed23 jeanna91587

      Posted

      How long did it take for your child to recover? My son is 8 yrs old. He's had it for 7 weeks. He's on prednisone for 2 weeks only. Rash,swelling of feet, joint pain and protein in urine. We're currently seeing a nephrologist. The selling and joint pain come and go. There are days that the rash seem lighter but then the next day it looks ad again.
    • jeanna91587
      jeanna91587 tinbed23

      Posted

      Hi tinbed23, So I think it took a couple of months but he was way better on the prednisone, which he took for a couple of months. Why did the doctor stop the prednisone? Our pediatric rheumatologist seemed to have quite a bit of experience with HSP and she kept my son on the prednisone and then tapered off to make sure the symptoms didn't come back. I know how hard it is to go through this and not know when it will get better...but it does go away. Maybe ask about the prednisone or talk to a pediatric rheumatologist?

      Take care. Jeanna

    • tinbed23
      tinbed23 jeanna91587

      Posted

      Thank you, jeanna92587. The pediatrician was concerned with the long term effect of prednisone. We've seen a dermatologist and doc infectious diseases but not a rheumatologist. I asked to be being referred to one but the primary physician didn't see it necessary. I will ask again since they are the experts to this type of disease. My son has been missing school and still undecided when to send him back due to reoccurring symptoms. Not sure what triggers the symptoms to get worse. Though I've read a lot about HSP. I still fell lost and also scared due to the kidney involvement. I'm glad your child recovered from it pretty quick.
    • jeanna91587
      jeanna91587 tinbed23

      Posted

      Hi. I really felt like the rheumatologist knew exactly how to treat HSP especially because it's so rare that most Pediatricians haven't seen it before. I know it's so scary but it will get better. Jeanna
    • hong7
      hong7 jeanna91587

      Posted

      Its good to know. My daughter is getting better last 3 days. Hope the rash never comes back. Fingers crossed.
    • elizabeth43856
      elizabeth43856 hong7

      Posted

      Hi,

      Any indication of what made it better? How long did it last?

      Did she by chance have her adenoids taken out?

    • hong7
      hong7 elizabeth43856

      Posted

      Nicole, my daughter, can eat and drink as a normal kid. She also sleeps well. Tummy sore was gone. Today is the forth day since the rash s gone. They come back a little on legs just an hour ago, but its far less serious. No treatment received or adenoids removed.

      If this improvement continues for another 2-3days, I think the illness is gone forever.

    • jeanna91587
      jeanna91587 hong7

      Posted

      So glad to hear that! I've also heard that if it comes back it is far milder than the first time. Take care, Jeanna
    • tinbed23
      tinbed23 hong7

      Posted

      Did you send your daughter to school when she had HSP? My son has had HSP for almost 3 months now. He has missed more than a month of school. We tried sending him to school but it seemed like it makes the symptoms like rash and swelling worse.
  • michelle7509
    michelle7509 hong7

    Posted

    Hello

    I have had HSP for 20 years and I am in the middle of a flare right now.  Has the doctor talked to you about Cytoxan or Rituxan ?  Please talk to him about these possible two meds. You remind me of my father looking for answers when I first got sick.   The Cytoxan really helped me.. but remember it is chemotheraphy.

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