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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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  • colleen46942
    colleen46942 Guest

    Posted

    Hello, your post was over a year ago and i wanted to know how your daughter is now? I have a 12yr old boy going through HSP and this is his 6th week now. Are her symptoms resolved now? does she get flare ups? Your insight would be helpful. I appreciate your time and i hope your daughter has made a full recovery,
    • stacy17947
      stacy17947 colleen46942

      Posted

      Colleen,

      My son is 9 years old and was diagnosed with HSP last week. The symptoms were severe stomache pains, the rash and swelling in his joints. HE was hospitalized for 4 days and given IV fluids, tylenol, morphine (which was later stopped after 3 doses). Befire the hospitalization he couldn't lift his hands over his head and his back hurt to the touch. Since we've been home we went back to the ER because his stomach pains were severe and now they have him on steroids and another pain medication. Today he can barely walk. My son is a star athlete and the most positve vibrant kid you could ever know and this is the most  heartbreaking thing we've ever been through. His urine test today showed protein in his kidneys so we are going to the nephrologist on Thursday. We have an appointment with the rhumetologist today. He slept well last night for the first time in over a week but every day seems like a new pain, however the stomach pain is always there. He can hardly eat. Ive been told that this takes 2-6 weeks weeks and I pray every second that this horrible virus leaves his body. Please keep me posted on your son's symptoms. 

    • colleen46942
      colleen46942 stacy17947

      Posted

      Today my son stayed home from school because the joints in his ankles were hurting him so much he could barely walk. He is at home keeping his legs elevated and has taken some ibuprofen and tylenol. Fortuately, he has not been having the stomach pains lately, those should diminish within a week or so. I can tell you that every day his rash looks different. He mentioned this morning that his legs felt like they were burning. The rash is mostly dominate on his lower extremities. The rash is thankfully not itchy but it looks to be dry and flakey. I will continue to keep you posted. This is comforting to have support from other parents that are going through the same thing.
    • stacy17947
      stacy17947 colleen46942

      Posted

      Colleen,

      Thank you for responding so quickly. It is comforting to speak to other parents who are going through the same thing. My son doesn't have school this week but I'm starting to worry and wonder how  we will deal with school going forward. I guess we'll take one day at a time as this seems to be par for the course with this virus. I'm told not to give my son ibuprofen right now. I'm sorry you're going through this. I wish never heard of this damn thing. Please feel free to email me anytime day or night and please keep me posted on your son's condition. Best of luck to you and your family. 

  • mary08460
    mary08460 Guest

    Posted

    My daughter is 5.5 and was diagnosed 5 weeks ago. She was not great for 3 weeks, huge bruising rather than the rash, had a week clear then it came back with the rash and bruising. She's now suffering with headaches. I find the whole thing so stressful as there is nothing we can do for her. I have another appointment at the gp today as calpol doesn't seem together headache, I also want too know how long we anise calpol for, over use won't be good for her liver.

    It is encouraging to see that it does get better, but leaflets given from the hospital that say it lasts for 4-6 weeks should be updated, if as a parent you are told months then at least you prepare.

  • lauren528
    lauren528 Guest

    Posted

    My Son is 6 years old. He was diagnosed with HSP in November 2015. He started with a rash on lower legs and buttocks. He had a little tummy ache but no other symptoms besides rash. It is now February almost march and he still has rash.

    We have been to countless doctors appointments checking his urine once or twice a week. All his urines were normal no blood or protein.

    We also met with nephrologists where he got an ultrasound. Everything looked normal. His rash starts fading away then he will wake up and get it all over again.

    Not sure when this will end ? Thankfully he has no joint pain, headaches, blood in stool and stomach pains.

    He only has the rash which also spread to his arms, elbows too.

    Hope this goes away soob

  • stacy17947
    stacy17947 Guest

    Posted

    My 9 year old son is in his 3rd week with HSP. We've had 2 hospital stays and a potential 3rd on the horizon if his kidney biopsy shows inflammation. The steroids seem to b helping as the stomach pains have slowed to a crawl and the rash is going away. He wasn't able to walk last week but this week he's much better. We've been to several doctors, rhumetologist, nephrologist, gastroenterologist, etc. a soft food and liquid diet seems to be helping with the stomach pains. Also heating pads on his stomach and Tylenol help as well. Looking forward for the day when the doctors tell us he is HSP free.
  • DisGrace19
    DisGrace19 Guest

    Posted

    I am 14 and so is my boyfriend. About 4 weeks ago he was diagnosed with hsp and i am very concerned about him. Tonight he had such bad abdominal pain that he started crying. Now i know your thinking that its not that big a deal but i have never heard nor see him cry before this. His swelling has been so bad that he has had to use my sisters crutches. He has had to miss over a week of school because of this. The rashes keep coming back and he is becoming very angry. I have read up on every site i can find about hsp but none say anything about when recovery should take place. I just want to know how long anyones recovery took and if it has been permanent.
  • brittany08747
    brittany08747 Guest

    Posted

    My daughter, who is 5, was diagnosed about 4 weeks ago with hsp. It's been a nightmare ever since. She had the rash, swelling on nearly ever part of her body, including her head and spine. Two weeks ago she had 28 cm of her small intestine removed due to intususseption, only to have another emergency surgery two days later due to twisted bowels. We spent a week in the hospital, were released, got to spend a day and a half at home, only to go back due to vomiting and severe abdomi pain. My poor little girl has had an awful time. Doctors dismiss this disease as less serious than it really is.

  • nichole123
    nichole123 Guest

    Posted

    Could central heating be a possibility of causing hsp as me and my daughter moved into a new property on Friday night we slept with the heating on and we both woke up with a headache however she was diagnosed hsp later on on the Saturday
  • michelle11593
    michelle11593 Guest

    Posted

    My daughter is also 6. Diagnosed with HSP 3 weeks ago. The rash keeps coming back aggressively her ankles are swollen and she has pains in her legs. Once a week she gets really high temperature. Her urine samples all come back ok. How long did it take for your daughter to be HSP free.
    • brittany08747
      brittany08747 michelle11593

      Posted

      Hopefully your little girl gets better fast! All the doctors dismiss the severity of it. Bring her in with any abdominal pain! My daughter started having abdominal pain, then vomited blood. We rushed her in and she had intususseption and 28 cm had already been destroyed. It's a very rare side effect of hsp but it happened to my baby so just keep an eye out! God bless and I'll be praying for all these little ones.

    • DadinTX
      DadinTX michelle11593

      Posted

      How is your daughter now? My daughter is still suffering from it and it had been two months since diagnosis.

    • kacy89887
      kacy89887 DadinTX

      Posted

      How long did this end up lasting or is it still going on? We were diagnosed today.
    • michelle11593
      michelle11593 kacy89887

      Posted

      It lasted about 2 months in all. It came and went a good few times in the space of that time. The last time it came was the worst, very aggressive, and temperature was sky high. That lasted about 2 days. Then it gradually disappeared and it hasn't been back since. Hopefully yours won't last too long. But there is light at the end of the tunnel 

    • kacy89887
      kacy89887 michelle11593

      Posted

      I'm hoping for light. How bad was the rash? Did you ever notice knots like up and down the shin? Hands and feet swelling? Anything you can share would be a blessing. I am just scared out of my mind. 

    • michelle11593
      michelle11593 kacy89887

      Posted

      It is very scary. I didn't notice knots however lots of swelling and at one point she was so sore she couldn't walk. I thought it was never going to end. Stay strong I promise it will eventually go away 

    • kacy89887
      kacy89887 michelle11593

      Posted

      So another question and I'm sorry to have so many. But where all was the rash with your child?

    • DadinTX
      DadinTX kacy89887

      Posted

      How old is your child?

      You have to keep your child hydrated to protect kidneys. Your child has to rest a lot but stay mobile as well at home. Avoid germs as much as possible. Avoid ibuprofen. Use Tylenol. Avoid sun and high temperature. Keep your home cool but not too cold. When wrists and ankles swell use cold compress like wetting small cloth and place it on swelling.

      Be patient, it does go away after 2 - 3 months. But you have watch kidney function for a whole year. I hope and pray you child gets full recovery and soon.

    • kacy89887
      kacy89887 DadinTX

      Posted

      I feel like there is no end in sight. Lots of swelling in different places almost every day and just when we feel the rash is getting better then bam it comes back. We went back to pcp today and urine was still ok but everything else has gone crazy. 
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