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Two months for my 13 yr old with HSP. Going crazy!!

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Beanie926
Beanie926

Hi everyone. I'm writing from the U.S. This is the only discussion group that I've found on HSP. There have to be more people suffering from this but they haven't found where to vent yet! smile

My daughter, 13, was diagnosed with HSP on Feb. 3rd. Previous to that, she had the flu and a respiratory infection and was given an antibiotic. The rash showed up first on her palms. They were like little cuts covering the whole palm on both hands. Later that day, her legs, ankles and butt were covered as well. It kept coming and coming. The rash on her legs lasted about 2 weeks, with just a handful here and there on her legs and ankles. The rash on her hands still come and go. 

In addition to the rash, she had severe joint pain in her knees, ankles, elbows, and hip, as well as nausea, headaches and abdominal pain. The joint pain is better but she does still experience it frequently in her knees and ankles mostly. She is still having headaches too. Nausea is the biggest complaint now. It’s been two months and she is still miserable. She hasn’t done a full day of school for over two months. At this point, the rash keeps showing up in her hands and it bothers her to hold a pencil! 

I feel awful for her and wish I could help her. Ibuprofen and Tylenol does not help but she does sometimes get some relief from Alleve. Sometimes I wonder if a lot of it is nerves or her reacting to the stress of it. If I mention this, she thinks that I think she’s faking. I know she’s frustrated. I’m frustrated too. The nurses at her school are losing patience with her showing up there every day even though we have a doctor’s note. They don’t get it. When is this going to go away??

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  • harleycw
    harleycw Beanie926

    Posted

    You are lucky to have the diagnosis, since many of us had so much trouble with doctors even getting to HSP as being an option.  Generally, I would stay away from blood thinners or at least watch closely when taking them as I think I see a link to even worse symptoms.  At a young age, I doubt doctors would recommend some of the types of items that seem to help folks as they are older.  The one thing that really concerns me is if there is ANY pain in the stomach area, you want to at the very least have a checkup with the doctor to check for anything abnormal later even if tests now don't warrant any concern.  For anybody that has an issue with how debilitating this can be, you should point them to this forum and the wikipedia link.   I'm a healthy adult and could barely walk for about a month.  I rarely complain about things and sure enough would push myself back into exercising thinking I would get back to normal just resulting in more relapses. Allow your child to rest and trust your judgement.  Reassure them it is not in their head but also feel lucky that with younger children, the statistics show they will eventually get over it and likely may not have it again later.  Good luck.
  • msgigani
    msgigani Beanie926

    Posted

    Making the iagnosis is the key. Now the disease process is chronic and the process the auto-antiboies may be present for 4-6 months. The acute phase lasts for 4-6 weeks when systemic symptoms may be present. The key now is absolute bed rest and pray that the disease process stops. God bless you all.
  • Mr._Rogers
    Mr._Rogers Beanie926

    Posted

    You're definitely not alone. Our 8 year old is now at around 3 months of this, and it's been very hard on everyone involved. It feels like there is no end in sight! Every time he starts to seem like he's ok, it comes back quick, and we feel helpless as he's in terrible pain. It's been maybe a month I think since he had the bad joint pain that left him unable to even walk, but he still has bad stomach pain at times, and the rash which doesn't bother him still comes and goes. After nearly a week of being semi-normal, he's now buckled over with stomach pain, and is basically pooping blood again. We've been taking him in to the doctor for regular testing to make sure there isn't reason to believe the more serious kidney and intestine issues haven't become a reality. In his case, the only thing that has seemingly made any difference is not allowing much physical activity. As soon as he does anything that is very physical at all, he seems to crash hard by the next day. We can almost tell when he's going to hit a bad stomach phase by when the rash reaches the bottom of his feet. I'm sure the rash stuff is different in many cases. The majority of the time, he would only get the rash on his legs, and elbows. Only once has is been on his butt, and arms. Having a really hard time accepting that this could go on for maybe even another 3 months, and that supposedly half of the people that have had HSP, get it again. This whole situation has been horribly stressful for him, as well as us. Any suggestions would be welcome!
    • harleycw
      harleycw Mr._Rogers

      Posted

      At 8 years old, this is still very young.  I'm over 40 and either I remain lying down and who knows how long it takes to eventually cure itself but each time now I take prednisone and it almost immediately stops it, but at such a young age, really the doctor may prefer the childs own body figures out how to stabilize it so they can be less likely to get in the future.  Although going on prednisone for about a week or two immediately stops it and then makes it go away, it seems to keep coming back in a few months and I have to repeat it.   Recently though I have found other things we have been calling triggers which you should research on your own.  Certainly when recovering, the body needs rest but when healthy, maybe start logging what types of foods they eat.   For me, chocolate is a trigger.  You will find not research to tie allergies to HSP (at least I haven't) but there is so much they don't know about this disease.  Just be aware what people eat and maybe start experimenting with cutting certain things out of the diet then slowly reintroducing them, especially with types of foods that aren't exactly on the essential healthy for you list.  
    • Mr._Rogers
      Mr._Rogers harleycw

      Posted

      Back from the doctor now. None of the bad signs are there, so he doesn't think he needs any additional testing. He figures while the HSP is responsible for the blood, it likely wasn't the cause. Basically if anything upsets his stomach at this point, it's likely to over react due to the HSP. I wouldn't be surprised if it was something he'd eaten that was just not sensitive stomach friendly. The doctor said that the lack of rash is a good sign, and he does feel that it's tapering off. That's not to say that there won't still be symptoms and such for awhile yet, but that there does seem to be some progress. Really we only need to be concerned if the bleeding gets worse while having a high fever. He said ibuprofen can help with the stomach pain since it's a matter of inflammation, and that he doesn't think he's to a point of risking prednisone use. We're just going to keep him to bland stuff tonight, and keep pushing fluids. He's already acting like he's feeling a bit better than he was a bit ago.
    • Beanie926
      Beanie926 Mr._Rogers

      Posted

      Thanks for your response. I'm glad the doctor saw some good signs and there may be progress being made with your son. He is so young and must be so scared. It's really hard to see your child sick and not be able to help them, isn't it? 

      Im curious when you say his rash is gone. Does that mean totally or the majority of it? The first few weeks my daughter's rash was at its worse but she does still have it in certain places. It continues to come in on her palms all the time. She just got some new spots on her legs today and more showed up tonight. It hasn't been there in awhile. It's also on the bottom of her feet and in between her toes. She can actually feel them coming in. It's awful. She keeps asking me why it keeps coming back and I have no answers for her. 

      Was as your son nauseous?

  • barber883
    barber883 Beanie926

    Posted

    Sorry to hear she has hsp  I am a 48 year old male that got it last july and am sttill fighting it  the one thing that helps my joint pain and flair ups is the steriod Predisone  also for the stomach pains my doc has me on tremadol seems to work the best.

     

    • Beanie926
      Beanie926 barber883

      Posted

      Wow. I'm so sorry you are still suffering. The thought of 6 more months of this scares the heck out of me. Do you still have any signs of the rash? I was just thinking of the sun too. Did you have to be careful of the sun?
    • barber883
      barber883 Beanie926

      Posted

      I have scars on my legs from when it first broke out and went way to far till they got in under control my legs looked like they were rotting away.  I have flair ups once in a while but when I do I up my steriods and it goes right away.  Until they got mine under control I went thru doses of chemo to try to stop it to heavey doeses of steriods thru IV.s. Be pactiant  with your daughter when she get flair up  I have high tolarance for pain but the stomache and joint pains hurt more than anything I ever had.   I live in pa and geisinger medical hospital did wonders fpr me.
    • Beanie926
      Beanie926 barber883

      Posted

      This is such a crazy disease. I'm glad for you that you seem to have it under control where you can be comfortable.
    • barber883
      barber883

      Posted

      here are pics of same legs  over the period of a month  they are in sequnce backward staered with spot then blew up (the most painful part) to skin breaking apart 
    • barber883
      barber883

      Posted

      sorry it did post pics in right order
    • Beanie926
      Beanie926 barber883

      Posted

      One word, wow. I've seen many pictures of this and it still amazes me. My daugher was covered from the waist down and the palms of her hands. Thankfully, she did not have the deep ones that you had. I'm happy that you found relief in medications.
    • LyndaLou7
      LyndaLou7 barber883

      Posted

      Oh my, I feel for you! My daughters was definitely not as advanced as yours. So glad that you have found something to help your pain.
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