Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Published: January 03

My daughter was diagnosed recently with Henoch-Schonlein purpura. She vomits for days at a time, gets a purple dot rash on her arms and from her waist right down to her toes. Her ankles and knees swell up to 3 times their size and she cannot walk. She also has abdominal pains that lasts for days. It has been 5 weeks since this started.

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Comment from: Kansas City mom, 3-6 Male (Caregiver) Published: January 03

My 5 year old was just recently diagnosed with Henoch-Schonlein purpura. We think his 15 month old brother might have it too. Three of my four kids were also just diagnosed with strep, including these two. The 5 year old cannot walk on his own, his left leg bothers him the most. He has abdominal pain much of the time (and a swollen abdomen and hips). Although he occasionally feels well enough to eat. I was advised to give something like protein shakes or pedia-sure if he won't eat, since at least that will put some nutrition in him. I am eager to see if the antibiotic and the codeine they prescribed for my 5 year old will help him recover from the Henoch-Schonlein purpura. We are two weeks into the Henoch-Schonlein purpura from the start of the symptoms, which were vomiting and high fever. Day four of the symptoms was when the pain and rash showed up. Two days later he started on prednisone, and by the end of that fifth day of treatment his purpura was nearly gone, but the pain has only gotten worse. The 15 month old is only three days into his symptoms, and the rash showed up yesterday for him, so we will see what happens with him. The strep will keep them from healing, so we are glad to have it diagnosed and being treated. This is definitely a scary time, and hard to see my children in so much pain. I sympathize with all of you who have gone through, 0are going through or will go through the same thing.

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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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