Are these normal symptoms of HSP?

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My daughter (almost 4 years old) was diagnosed with HSP last Friday.  It all started with joint/muscular pain and bruise/rash on her buttocks, legs and feet. She has on and off abdominal pain.  There was no protein in her urine initially but I am getting her urine checked every few days.

Seven days later, I can see some of the bruise/rash slowly healing/fading (i.e. some of which have already disappeared) but this evening she started to complain her legs hurt badly (even after giving her Panadol). After examining her legs, we found more new spots (petechiae) on both of her legs. Is this normal?  We were told by the hospital that HSP can last for 4 - 6 weeks.  My questions are:

(1) Are the rash/petechia (that come with HSP) supposed to come and go?  I seem to be getting contradictory information from different doctors. Some doctors told me that once she has all the rash, it will take time for these rashes to disappear and there should not be anymore new rash.  Other doctors told me that you can get rash that come and go.

(2) She is still experiencing muscular/joint pain and that can only be managed by Nurofen (which we are told not to use too much as it cause more bleeding).  I do not think her muscular/joint pain have improved that much after 7 days. We were also told by the hospital (on the day that she was diagnosed HSP) that the muscular/joint pain should resolve within 3 to 4 days. Is it normal that she is still experiencing muscular/joint pain (which has not improved much) after 7 days?   

Would love to hear other people's experience.

thanks so much

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  • Posted

    It comes and goes.  Also if you aren't getting enough rest it can come back and even get worse.  If you think about the disease it's the body immune system overreacting to whatever triggered it and if anything like not enough sleep, too much sun, allergens in foods, bad medications or anything else causes the immune system to increase it makes symptoms.  The blood vessels leak causing those spots and is doing the same and sometimes worse inside the body.  When it gets bad enough you have that build up in the joints which really causes the soreness.  Be very careful with foods to ensure they are non allergenic and more towards the bland side.  I'm still also shocked why they don't go with prednisone even in kids when symptoms get this bad.  It doesn't help in some cases, but the down side compared to the current symptoms aren't much in my opinion.  From studies it leads to generally better outcomes in general.  Good luck taking care and hope it goes away soon without too many more reoccurrences.

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    • Posted

      thanks for your prompt response and your useful information harleycw. Maybe I was not making myself clear enough.  I understand that with HSP, it can recur weeks/months even after a person has completely recovered from HSP completely.  Though I am not referring to reoccurrence. With my daughter, I am referring to her symptoms while she is still going through this course of HSP (this is the first time that she has HSP, which I was told will last from 4 to 6 weeks, currently she is on the 9th days since being diagnosed with HSP so I would not define this as reoccurrence). So is it normal for the rash to come or go during this time? And is it normal for her joint/muscular pain to persist for the whole of 4-6 weeks (i.e. do people who have hsp have joint/muscular pain that last for 4 to 6 weeks to the point that they cannot walk properly etc)? I am not quite sure if it's coz I am not giving her enough Panadol (coz apart from muscular/joint pain and getting tired easily she is sleeping and eating well, no blood in wee or poo so I am giving her Panadol only if necessary (coz I am not sure how long I will have to give her Panadol for, so I am only giving it to her when really necessary)?   

      For people who have HSP reoccur again, how do you know if it's just a flareup (i.e. not a full on HSP, just rash that comes and then disappears after a few days' time) and not a full-on HSP?  coz with a full-on reoccurrence HSP don't they have to go through the whole cycle of checking (i.e. check urine for at least once a week for the first four weeks, then fortnightly for weeks 5-12 and then every 6 to 12 months etc)? 

      thanks 

        

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  • Posted

    You were clear enough, I just probably was not detailed enough in my reply.

    I don't think of it as reoccurrence.  It's really just that your body immune system has gone wacky when you have HSP and therefore, they way your body behaves just depends on how clean your system is internally.  You can have a small flare up that is light, or constant, or light going away and in the middle coming back and get even worse or any way you can imagine it.  Everything just depends on the person and what is going on with them.  I have had many cases of it and all the different types.   I was a lucky one because I discovered that prednisone worked really well.  I just happened to get it prescribed to me luckily for the first incidences with the pharmacist just thinking it was a foot rash.   The first time I actually went to a "real" doctor, they actually did not prescribe it and the symptoms starting getting so bad over many days my joints were extremely painful and I gave up and found the original pharmacist bypassing my doctor and got the prednisone and pretty quickly the symptoms started to subside again.   I really needed to avoid certain foods and in particular ( I was a unique case) I am pretty sure it was triggered by chocolate of all things.   Good news is that after finally avoiding chocolate completely for 2 years, I remained HSP free and the body healed itself enough, I slowly reintroduced chocolate and after 3 years, I have not had even a single red dot occur.   I'm much older in forties but can remember a couple incidents when I was in college that had the rash and wiped me out but it only occurred those two times back then and not again for 20 years later.  Final thing is that as young kids they are much more likely to just get over this and rarely get it again once they do, especially if it is this lighter version with no kidney involvement.   Best of luck to you all !

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  • Posted

    These are all symptoms. As far as I know I’ve had one if the worst cases of HSP ever. I lt caused me to have a kidney transplant but this was in the early 90’s. I suffered the all of these symptoms With extreme severity. Please even after the symptoms disappear to make sure you monitor her blood pressure daily so she does not suffer the same faith I did. Feel free to call me 417-952-7203 with any questions or concerns. No child should have to go through what I did. 
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