Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: macca, 3-6 Female (Caregiver) Published: November 13

My daughter was diagnosed with Henoch-Schonlein purpura in July, I have been advised she has one of the worst cases seen, her rashes have been so severe at times, she still has bruising and protein leaking from the kidney 4 months on. I was told this would last 6 weeks. She also still suffers with joint pain. This has been an awful time for us.

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Comment from: sapper_wife, 7-12 Male (Caregiver) Published: October 16

My son is 10 years old. He is currently suffering from Henoch-Schonlein purpura (HSP). It started about 4 weeks ago. He developed a very small rash of bumps on his shins. I thought he had been bitten by fire ants. Within 3 days, the bumps began to spread, and his right foot swelled up twice the size of his left. By the next day, he was vomiting profusely and in intense abdominal pain. The rash was literally spreading while I watched. I rushed him to the ER as a result of the abdominal pain. While in the hospital, the rash started to get better when they put him on steroids, but he was still vomiting(even with IV Phenergan and Zofran) blood and having bloody diarrhea, as well as pain so bad that even while on a morphine pump, it could not be controlled. He also had blood in his urine and was extremely dehydration. After the pain in his stomach subsided, 9 days later, he was sent home on prednisolone, Pepcid and oxycodone. The very next day, the rash came back with a vengeance, it was EVERYWHERE. He also developed intense joint pain to the point that he could no longer walk or stand up. He is now going on 4 weeks of this disease, the rash is still very prevalent, but the abdominal pain and joint pain seems to have gotten slightly better.

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Comment from: SharingConcern, 7-12 Male (Caregiver) Published: September 26

My 9 year old son developed HSP, it started with a rash on the back of his knee. It quickly spread to his the rest of his leg, by the time I rushed him to ER which was 30 minutes away he could not walk. That evening they took blood tests and diagnosed him, prescribed prednisone and ibuprofen. Seemed like he was on the mend, but 24 hours later he woke and the HSP had spread to his colon. He spent a week in the hospital where they treated him for the pain and took daily urine samples to insure it had not spread to his kidneys. He is going home today with prescriptions and appointments for follow up. I worry about every rash that appears on his skin, but now I know what to look for.

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Comment from: Robin's Momma, 7-12 Female (Caregiver) Published: August 27

My daughter was diagnosed in October 2011. She was originally diagnosed as having an allergic reaction to amoxicillin and told to take anti-histamines to deal with the rash. In February 2012 she was diagnosed with HSP caused by kidney disease and was put on steroids. This has caused huge weight gain, and severe stretch marks. The steroids have also caused a huge moon face. Are there any other pre-teens out there with this, and if so how are they coping through with this horrible disease?

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Comment from: MomOfThree, 13-18 Male (Caregiver) Published: August 13

My 14-year-old son has been sick for two months and was finally diagnosed with Henoch-Schonlein purpura. His first symptoms were a general feeling of malaise but then his stomach started hurting. He lost his appetite and though he was hungry, at times he was hardly able to eat. By the second week in July, he started with the rash. We initially thought a cat scratch had gotten infected but his pediatrician immediately diagnosed the 'rash' as blood pools under his skin (vasculitis) but wasn't sure what was causing this so ordered a ton of blood work. Over the weekend his 'rash' was worse and he was feeling worse so we went to the Children's hospital where they immediately diagnosed him with HSP. It's been almost a month now and he still does not have all his strength back. He has bouts of bloody stools and protein is present in his urine but so far, no blood in the urine although we have been cautioned to be on the lookout for it. We did have a second trip to the ER after the first experience with blood in the stools but they reassured us as long as it was not in his urine he was okay. After almost a month we are seeing feet/ankle swelling and he bruises easily. His stomach has stopped hurting, thankfully, but all he can do and feels like doing is resting. We were told at the hospital this could take up to 8 weeks to pass and that it can recur. They also said if the blood starts showing in his urine he would be put on long term steroids but they are trying to prevent that as patients who are placed on the steroids have a risk of greater reoccurrence. I hope this helps someone else. This is the craziest thing we have ever heard of and until now never even knew what this disease existed. I wish you all a speedy recovery!

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Comment from: ronika287, 3-6 Female (Caregiver) Published: August 13

My daughter is 6 years old and she fell over a curtain rod and sprained her ankle well day before that she was bitten by a lot of mosquitos and developed a rash. I took her to urgent care which just said she had insect bites and sprained ankle. Well next day my daughter was unable to walk and the other leg that was not sprained began to swell and had developed bruises on the bottom of her feet. So severe I had to carry her around. Brought her to the ER and that was when we were told she had Henoch-Schonlein purpura. She has red spots all over her legs and arms and swells mainly at night. It scares me because I thought that the insect bites gave her a disease and it was starting to take effect and seriously hurt my daughter. This virus is very painful to my daughter and she takes it well saying mommy I look like a leopard. I just wish the best for all the people diagnosed with this virus and hope my daughter doesn't have to live with this ordeal again.

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