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Posted By Sharon on September 29, 1998 at 16:55:33:

My grandson has been diagonosed with Henoch-Schoenlein Purpura (HSP).  I have read a lot about the disease on the internet.  There seems to be more questions than answers.  Is there anyone or any place in the U.S. that "specializes" in this disease?  Please help.  He is 3 and a half years old.  He has had this for one month so far.  He is taking prednisone.  He goes back and forth between feeling pretty good, to feeling bad with tenderness, stomach pains.  He has not had any swelling in his knees or ankles since taking the steriod.  What will happen when he is taken off of the predisone?  His parents have made several trips to the emergency room since this is very scarry for all of us.  So far, the doctors do not seem too concerned.  He is seeing a kidney specialist to keep "an eye" on things.  The kidney doctor seemed surprised that my grandson still had this disease after 3 weeks, that is why he put him on the predisone.  From what I am reading, this could last for months.  Thank you for any information or referrals you could give us.
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