Patient Comments: Henoch-Schonlein Purpura - Symptoms

What were the symptoms of your Henoch-Schonlein purpura?

Comment from: debra_denton, 7-12 Female (Caregiver) Published: July 08

My son had HSP 20 years ago and it is a very serious disease. We almost lost him several times and he was in the hospital 7 weeks. The only cure is high doses of steriods and hopfully catch it early. My son was first being treated for Rocky Mountain Spotted Fever. If he had of received treatment for HSP right off the bat he might not have gotten so sick.

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Published: March 29

My son was diagnosed with Henoch-Schonlein purpura at 4 years old. It started with his ankle swelling. Well I thought he had sprained it or something but then his head swelled up. Took him to the doctor and they said it was an allergic reaction to a bug bite. Well it didn't go away 2 days later so I took him to a hospital and they said he had an ear infection. Two days later his private swelled up to the size of a grapefruit and I had had enough. I took him to the local Childrens Hospital where they diagnosed him with HSP Nephritis. It settled in his kidneys and at one time had to be put on life support! He is now 11 and still on high blood pressure meds and others and sees a nephrology doctor once a month. This was the scariest ever for me!

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Comment from: Concernedmom, 7-12 Male (Caregiver) Published: March 17

My son is 7 and was just diagnosed with HSP. He has been sick for a week now. The vomiting stopped after 2 days, but the fevers continue. Sometimes they are very high around 103 to 104. We have kept him on Motrin and Tylenol, but I just fear that we are putting way too much drugs into him. He has finally eaten a solid meal after one week, but I have to force him to eat anything. He would rather stay curled up in bed all day. I just wonder if antibiotics would help and what are the chances of my other kiddos getting this.

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Comment from: mayr, 3-6 Male (Caregiver) Published: February 24

My son was 6 when he got Henoch-Schonlein purpura (HSP), it started with his legs paining him. I thought it was just that he hurt his leg running around until I noticed a rash starting to form on his lower leg, I brought him to A&E and while we waited to be seen by a doctor his 2 legs had swollen up so bad that I had to put him in a wheel chair because he could no longer stand. It was then the doctor diagnosed HSP and until then I had never heard of it, it was a very frightening experience for us. He had to spend a few nights in the hospital and it lasted about 4 weeks. He is now 7, nearly 8, and it hasn't returned and hopefully it never will.

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Comment from: Maria123, 45-54 (Patient) Published: February 14

It was 40 years ago that I had HSP, it took ages for them to figure out what I had, my fevers were so bad I had to have ice baths quite a few times. I spent most of a year in and out of the hospital. I was on a drip for 13 weeks straight. My doctors tried everything and in the end they had told my parents to be prepared for me to die. One last treatment was tried and I recovered. It is funny when I read about HSP and they say a mild illness that you will recover from quickly and yet I know that I almost died of it.

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Comment from: pa, 13-18 Female (Caregiver) Published: February 07

My girlfriend was diagnosed for Henoch-Schonlein purpura and also diagnosed for pneumonia. After having a sore throat and a sort of recurring fever, she was admitted to the hospital for 1 week and took prednisone as her steroids and antibiotics for her pneumonia. She's subjected for kidney biopsy to monitor her kidney. Additionally, her body and face swells and I feel pity for my girlfriend. Now, she's been discharged and advised to rest and manage her diet, her diet is low salt.

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Comment from: shopmommy, 3-6 Female (Caregiver) Published: February 03

My Daughter is 4 years old. This started as a "rash" on her butt and thigh area. The next morning she was vomiting and screaming that her tummy hurt. We took her to urgent care they did a strep test and blood work. No fever or and other symptoms they gave her a pill for the vomiting and treated her for strep. That was a Monday by Thursday she was still vomiting and screaming in pain (the now called petechia rash) has spread to her legs, feet, hands and arms. We took her to the hospital she has lost 3lbs and had not had anything to eat in 3days. They gave her IV fluids and said it was strep. After telling us it could be LEUKEMIA. Sent her home. The next Monday she still can't eat still in pain and the "petechia rash" has got worse we take her back to the hospital and they now tell us it is HSP today is Thursday 2/3/11 and she is still vomiting and in pain and the rash looks worse than ever.

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