My 5 year old daughter just diagnoised with Henoch-Schonlein Purpura

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My daughter who just turned 5 in Sept was diagnosed with HSP on Sunday (a couple of days ago). It started the day after Halloween. She did take a fall on our deck earlier that week and when her feet and ankle started swelling up, we thought it was a fracture or sprain and took her to the hospital for an ex-ray. The ex-ray didn't show any fractures, but they did put a cast on it just in case due to the ex-ray wouldn't show any torn ligaments. A few days later the other knee started swelling a bit (not excessive) and then a rash appeared on her foot and ankle and butt. She also complained that her stomach hurt off and on and a headache off and on. She also wouldn't walk as she said it hurt. So I started looking up the symptoms online. The one thing that came back was HSP even though I've never heard of it before.

I called the doctor to get her in and my doctor was away and another doctor was on call. He said she was just afraid of walking and we just had to encourage her to do it. Also the rash he chalked up to heat rash as she was sitting a lot and not moving around like normal (she is a very active kid). I insisted to having tests done even though he said it was not necessary and would come back negative.

One test that was done was a throat culture and it came back she had strep throat. But I didn't find out about this until we went to the hospital again 2 days ago (a week after the first time), as her rash was more prominent and her hand was now swelling up. The doctor there reordered a blood test and urine test as well as an ex-ray of her stomach. There was a pediatrician at the hospital at that time and she came to examine my daughter and she is the one that confirmed it was HSP. No one I saw ever saw it before, but the Pediatrician said she sees 4 cases every season. She said it may reoccur and be ongoing for the next 3 months with good days and bad. I kept my daughter out of school (she is in preschool) last week and the Pediatrician wants her out this week too.

Her cast came off at the hospital when she was diagnosed with HSP as obviously the swelling had nothing to do with the fall.

My daughter seems to be in good spirits for the most part in the mornings and first part of the afternoons, but towards late afternoon to evenings, she seems to have the worst of it as her mood changes completely opposite to what she is normally (very cranky and uncooperative) and is very touchy. Although a few days ago, it was all day from the time she got up to the time she went to bed. So I think the Tylenol is working for the pain. She is also on medication for the step throat for 10 days. The rash seems to be fading some as well and not reappearing elsewhere. Although I am aware this could happen with this disorder.

This was a total shock to us as she is a very healthy child and very active. For her not to walk due to the pain or not to want to walk, is totally opposite to her personality. I have to carry her everywhere. Sometimes she will try to walk with help from us, but other times she just won't try saying it hurts too much. The Pediatrician says she should be walking again soon and wanting to walk.

I am worried it will affect her kidneys as her urine test had blood in it. Everything I've read says most kidney issues will pass with the disorder. I am also concerned that she may have problems with her joints after the disorder is past such as arthritis.

I found this site while researching HSP and wanted to share this. I welcome any feedback or suggestions on getting through and coping with this situation as I'm very concerned for my girl.

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  • Posted

    My 8 year old son was quickly diagnosed with HSP by his primary care physician on Monday. My son's symptoms started around Halloween as well, he complained of leg pain, stomach aches, and headache. We thought he was just trying to get out of going to school as he would only complain before it was time to go to school or do homework. Thinking he was just experiencing growing pains, I made a Dr. appointment, so the Dr. could tell him there was nothing was wrong with him. 20 minutes before it was time to go to the Dr. the spots appeared below his knee's and ankles. The Dr. told me he was going to be missing a lot of school, and prescribed him Tylenol and 20mg of Prednisone daily.

    The first 3 days where OK, he stayed in bed and slept, but the first 3 nights were HORRIBLE. He woke up at 2 am each night screaming with abdominal pain, and Wednesday night he was up all night vomiting. Last night was our first full night of sleep, thank goodness!

    My son's spots are clearing up, you can hardly see them. He has been excused from school thru the Thanksgiving holiday. I would love to send him back to school but I'm so worried it's going to spark reoccurrence of his symptoms. Like your daughter my son is very active in sports and likes to run and play.

    I'm feeling all of your emotions right now, and I hope both of our children recover sooner rather than later.

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  • Posted

    Hi bev32977, I wanted to follow up with you to see how your daughter fared to make sure I'm doing everything I can for my son. My son just turned 5 in February and was diagnosed a few days ago with HSP. He is now taking 30mg of Prednisone daily after the disease started affecting his stomach. The medicine seemed to help right away and he was able to walk much better and his pain seemed to go away, but the second day of taking it his knee pain came back and he started limping again. How long did the joint pain and all the craziness last for your daughter? Is there anything you learned that you could share with me about treatment etc? Any information would be greatly appreciate, as I like you just am so worried about his kidneys and just him getting better. Thank you! Jeanna
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  • Posted

    Hi there, I'd like to share our experience as it's been and still remains a very stressful time for us. We're based in Rome, Italy and our 5 year old daughter started displaying symptoms on 13 Jan (spots on her legs, painful limbs) so the wife insisted we take her to the A&E where she was immediately (well, after a 3 hour wait) diagnosed with HSP. Our girl is also coeliac so we were initially worried it might be related - we've been assured it isn't. I'm thinking it's just very bad luck. Twice. Anyway, her symptoms come and go, she goes to pre-school for a week and then is home for a week or so when the symptoms flare up again. We're been checking her urine with these urine sticks at home as internal bleeding in the kidneys is a risk but luckily she's fine. Three months on and we're still in the middle of it. She's been off school again now for two weeks, her hands and legs are still full of spots, painful and swollen. We've given her nurofen for the pain when she complains of it. And that's that, very stressful not knowing what caused it or how long it will last. How is your little one?/How are your little ones?
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  • Posted

    Hi I am Michelle single Mom of 3 year old who seems tobe suffering with this also, butwhat is weird about it is I had it when I was a child and I was hospitalized for it on 2 seperate occasions, I was to the pointofbeing cripled and had to ridein a wheelchair,at this point (1971) they did not seem to know much about it, what I can tell you is I think it is a life long thing of course thesymptoms may change into adulthood, the only thing I don't suffer is a fever, the leg pain behind the knee recurring after many years of no issue, I suffer acid reflux which has been long term from the age of 13, headaches come and go with no known cause and stomach contractions after eating. So I guess what I want you to know is I don't think it will ever completely go away, but will probably get better for a few years only to return at a later date and now that I knoe the correct spelling I can talk to my doctor about it, For many years I have been looking for info on it, because I remember hearing the doctor tell my Mom the diagnosis the rash returns on occasion in time of high stress this shoud be consisdered a long term disability.
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