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My daughter is six and has had HSP for 8 weeks. She has ...

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My daughter is six and has had HSP for 8 weeks. She has not had any kidney involvement, thankfully, but has had swelling and a rash that just will not quit. I was told that this was a 4-6 week thing and the doctors are very casual about it outside of insisting that her urine be checked. It is very much a no blood in the urine, no worries kind of scenario. This is so distressing to me because she has suffered tremendously with the only words of advice is motrin and benadryl. This rash has ravaged her legs, her elbows, her hands. Just when you think it is clearing, another round begins. I haven't seen her normal skin in months. It starts off like little bumps. It gets very itchy and swells up like hives. By the next day, it is flat and look like purplish red bruises under the skin.

I swear there is something more going on. My daugher has been a zombie with no immune system while this is happening. She has gotten several colds, the stomach flu, and now another flu with relatively high fever. Each time her body has had to fight some other illness, the HSP symptoms disappear altogether. As soon as she is on the mend from whatever was ailing her, the bumps come back and it starts all over. I have made an appointment, and she is going to be seen at a children's hospital next week. None of us can take much more of this.

[i:5197abd5e6]This message was automatically imported from the original Patient Experience[/i:5197abd5e6]

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  • sydney64406
    sydney64406 Guest

    Posted

    Hello,

    I am 19 years old and "apparently" diagnosed with HSP. I have been too the hospital twice since being diagnosed a few months ago and there has yet to be anything wrong with my blood or urine. The only symptoms i am experiencing is the rash. The rash is out of this world so much so that i am starting to think i have something other then HSP however i can not find another rash that looks similar. it has flared up roughly 4-5 times since december. starting with a few red dots on my lower leg ending in raised hot and extremely uncomfortable welts going uo my thighs.

    Has anyone else only experienced the rash??? i need answers!!! i have tried vitamin e oil on the rash, calamine lotion, ant itch. i have been taking iron pills as i am anemic and fish oil with omega 3 as i read it was good for immunity disorders. someone please have answers.

  • y06949
    y06949 Guest

    Posted

    Hi this is happening to my god daughter I hope your princess is doing well. Was wondering if they ever figured out what it was?
  • DadinTX
    DadinTX Guest

    Posted

    Hello, I want to know how is your daughter now. My 8 years old daughter is going through the same pain and suffering you described. There is just not enough research and I truly believe that the medical community knows much.

    According to the post it has been 10 years since your daughter experienced it. I really want to know how long does the suffering lasts. How has your daughter's life after HSP manifestation.

  • kacy89887
    kacy89887 Guest

    Posted

    Is your daughter better? We have just been diagnosed. 
  • brittany08747
    brittany08747 Guest

    Posted

    Hi! So sorry you're going through this! My daughter was five when she had it. It would look like someone folded a rag and put it under her shins and on her spine. The swelling was crazy and a lot of days she couldn't walk. It's so helpless as a mother. It will get better. My daughters hsp caused her to have intususseption and she had 28 cm of her small intestine removed. Then had a second emergency surgery two days later for a bowel obstruction. That was in March. Right now we are dealing with some thyroid issues, but other than that you would never know she had hsp or the surgeries. She's been symptom free since her surgeries. We get her urine tested weekly to make sure her kidneys are functioning correctly. I pray your daughters is short lived!! Best of luck!! Let me know if you have questions!!!

  • stephruthlewis
    stephruthlewis Guest

    Posted

    I know this message was a long time ago. I’m going through the same with my 5 year old daughter. The rash disappears then comes back worse the next day. Only been about 4 weeks now. Just wondering how long it lasted with your daughter. X
    • DadinTX
      DadinTX stephruthlewis

      Posted

      So sorry to hear about your daughter. The rash will come and go several times for 3-6 months. You just have to be patient and me sure you give her a lot of water and non-acidic drinks. Feel free to text me at 817-381-6808 if you need more guidance.

      Hope and pray your daughter feels better soon.

    • michelle11593
      michelle11593 stephruthlewis

      Posted

      It lasted a couple of months with my daughter. We had to get her urine tested weekly. It would go away completely and then come back worse. Around 8 weeks in she got the rash back reall bad but it disappeared after a couple of days and hasn’t returned. I really feel for you and your daughter. It’s takes time to go so just lots of water and tlc. I hope it goes soon x 
    • stephruthlewis
      stephruthlewis DadinTX

      Posted

      Thank you for your reply. It is so worrying. She sometimes gets joint too. Today the rash is really bad on her legs and has spread to one of her arms and she said her elbow hurts. I have been testing her urine every week which has been ok. I will just have to wait and see. Thank you though. X
    • stephruthlewis
      stephruthlewis michelle11593

      Posted

      Thank you for your reply. It is so worrying. She sometimes gets joint too. Today the rash is really bad on her legs and has spread to one of her arms and she said her elbow hurts. I have been testing her urine every week which has been ok. I will just have to wait and see. Thank you though. X
    • DadinTX
      DadinTX stephruthlewis

      Posted

      Yes, sadly this illness will test your patience. You might want to limit her physical activity and avoid sunlight and germs. Fever causes rash as well. Feel free to ask any question anytime.
    • stephruthlewis
      stephruthlewis DadinTX

      Posted

      Thank you for your reply. I worry when she has games and PE in school. I keep telling the teachers to let me know straight away if any problems. Annoyingly the class have a day out on Thursday outdoors all day. I hope it chucks down with rain so they have to cancel. Otherwise she’ll have another cold after it. 
    • DadinTX
      DadinTX stephruthlewis

      Posted

      You will have to tell the school to excuse her from physical activity. It is very important or your daughter will suffer.
    • claire14921
      claire14921 DadinTX

      Posted

      Hi. I have spotted you have replied to several HSP discussion and would love to hear ypur thoughts on my daughter. She is 5 and was diagnosed with HSP 5 weeks ago. She came home from nanas and had been to the park when she got stuck in a baby swing. She was struggling to walk and I spotted 1 small red dot on the back of each leg I thought it was maybe a pinch where she had got stuck. 2 days passed and her left leg was suddenly covered in loads of red dots that didn't fade under glass and then her ankle started to swell suddenly. So quick in fact her ankle went black like a bruise as it could strech anymore. She was upset mad couldn't walk so straight to the hospital for us. The first doctor had no clue but the second had had training at Great Ormond Street and was on the ball. They did blood test and everything was good but her urine test showed plus 3 blood and protein which they said we need to keep an eye on. They sent her home the following morning saying give pain relief but no ibuprofen. Since then she has only had one more flare up which was days after and has luckily been well in herself other than fatigue mostly due to 4 weeks late having a water infection. She was given a week's worth of antibiotics and has now completed those but this is 5 weeks in and her urine is still showing plus 3 blood and protein which is worrying me as I'm wondering how long her kidneys can take such high levels like that. The doctors keep saying test her urine every 2 weeks but if nothing is changing I feel they should be doing more. I don't know what to ask them to do. I'm at a loss and have read more articles than I can count about HSP. I'd love if you had an advice or opinion about what to do next. Thanks x

    • monykros
      monykros claire14921

      Posted

      Hi Claire,my 5 year daughter was diagnosed with HSP last week after swelling in her left ankle that was becoming blue the next day and then her other one the same. We were sent home from the hospital after blood and urine tests that came back fine. They thought she had a immune reaction but nothing about hsp. The third day she started the rash and stomach pain and they figured out that it was hsp. Now it is a week but her pain in the stomach is terrible. How is your daughter now? I am writing to you because the similarities with the that stick that my daughter had from the start on the back of her leg and nothing else. I do hope that your daughter is fine and hope that it is going to be fine with ours likewise.
    • shazia55803
      shazia55803 monykros

      Posted

      Hi,

      My 6 year old son just got diagnosed yesterday. He has the bruises that seem to be getting better. Just right knee was swollen now getting better. No blood in urine. But today been saying bad stomach pains and vomited once. I would like to know how has your child recovered did you see specialist? Did symtoms come back

      Thank you so much

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