1. Community
  2. Blood & Immune System
  3. Henoch-Schonlein Purpura

2nd flare up of hsp please help

Posted , 2 users are following.

amber_6770
amber_6770

My daughter is 9 years old and on her 2nd flare up of hsp. She was 7 years old when they first found it. It was what seemed to be a normal.one she had blood and protein in her urine for a few months with a rash and all went away and things were back to normal. This time it seems to be a lot worse. Its been about 6 months and her protein creatinine ratio started at .30 and has went up over the months. She has been on a all organic diet for 2 months and on steroids 20mg for 1 month.  Well the levels jumoed from .60 to .95 in the last month. They have now upped her steriods to 30mg and added blood pressure medicine.  They say if she goes to a 1.0 level she will have to do a round of chemo. Im at a lose and dont know what else to do. None of the docs I go to seem to know to much about it so dont give me much advise. What else can I do? Has anyone else experienced this with the hsp attacking the kidneys and what treatments were used? Did they help?

0 likes, 3 replies

3 Replies

  • terri27731
    terri27731 amber_6770

    Posted

    Hi Amber

    I know you must be very worried but if you read other peoples' comments it is quite common for HSP to recur before going away. In my own experience with my daughter who is 21 , stress is a very big factor . It seems unlikely in a 9 year old but perhaps you can relate to that. With HSP the immune system has gone into overdrive and the body is attacking itself by mistake, thinking that it is targeting some alien germs. The quest is to discover what is triggering this response. Some people have found that removing the tonsils cures the HSP. Resting, eliminating stress, getting quality sleep at the right time, i.e. at night, eating a quality diet, getting enough vitamin D- all of these things are considered important. I guess it boils down to living the healthiest lifestyle you can. Ask the hospital to test for vitamin D and for streptococcus which can be present in th e tonsils and is often a trigger for HSP in the first instance. Unfortunately HSP along with many other auto immune diseases is little understood at the moment. Fortunately it usually resolves itself, especially in children within a couple of years. I wish you and your daughter well and hope for a speedy recovery.

     

    • amber_6770
      amber_6770 terri27731

      Posted

      I wanted to thank you for your reply! My daughter had a follow up attp on Tuesday and I had them test for strep and vitamin d. She came back positive for strep. Even though she is not sick at all and no signs of strep. However they are treating it with antibiotics and said they can not remove her tonsils because she is on steriods. Her vitamin D levels also came back low. Hopefully this helps her some! Thanks for the advise! 
    • terri27731
      terri27731 amber_6770

      Posted

      That is interesting, please let us know if and when your daughter recovers. Antibiotics upset the good bacteria in the gut so when she has finished the course I would get her a supplement to replace the good bacteria.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.