Better times

Posted , 5 users are following.

I thought I'd add a positive discussion for a change! 

My daughter has finally turned a corner where I can actually say she's better. The rash is gone (other than a few dots here and there for no particular reason) and her joint pain is much better. She does have occasional knee pain but she had some of that before all this started so I'm not really sure what to contribute that to.

Her biggest complaint is still the nausea. She has it every day. She, also, still cannot eat certain foods that make her feel worse. This is the fatty stuff or a lot of dairy. 

 

She had some headaches before the HSP but they got worse when it started. She got more tension headaches during those 4 months. She actually had a full-blown migraine with aura about a month ago and we ended up at the ER. Luckily, she hasn't had another one but she now has a neurologist to add to the list. She will most likely continue to have tension/migraines in the future because I have them and they are hereditary, unfortunately.  

The tension that gave her the headaches also gave her a lot of anxiety. She had an extremely difficult time through all of this. Being a 13 year old girl isn't easy to begin with but this really did a number on her mentally. For that reason, I had her start talking to a social worker/psychologist. This has been the best thing for her. She has become less anxious and actually enjoys going to see her now.

We are really hoping that this is the last we see of HSP. Obviously, we all know that it can come back but we pray that she's one of the lucky ones! 

I hope this post helps someone to realize that it will go away at some point. I'll tell you that a few months ago, I never thought it would.

 

1 like, 5 replies

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5 Replies

  • Posted

    So glad to hear she is feeling better! I hope she continues to recover & that she doesn't have to experience HSP again.

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  • Posted

    How long did it last? My son is 8 years old and he's had it for 7 weeks now. Rash, joint pain, swelling, blood and protein in urine. The joint pain and swelling of feet come and go. We just started seeing a nephrologist.
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    • Posted

      Hi there.

      I'm sorry to hear that your son is suffering.  The first two months for my daughter were awful.  She had the rash, joint pain and swelling, headaches, abdominal pain, nausea and developed a sensitivity to dairy and fatty foods.  She never got the blood in her urine.  They tested her for 6 months but, thankfully, it never came with her HSP.

      By the third month, the rash was pretty much gone but did come and go a little on her hands and legs.  Nothing like it was at the beginning but it did show up.  Besides the rash, her other symptoms were still there, just not as severe.

      By the fourth month, the rash was gone altogether but she still had joint pain, nausea, headaches and stomach aches.

      As of today, she is doing much better.  She does still have stomach aches and nausea daily and very frequent headaches.  It has almost become a way of life which is awful to say.  The doctors say that there is nothing they can do for her nausea.  She still cannot tolerate dairy or fatty foods.  

      HSP is an awful thing to have, especially for someone as young as your son.  It takes over his and everyone around him's life.  With time, hopefully he will continue to get better and you will be able to say that it is over.  Good luck to you.  I am sending positive thoughts your way.

      Maureen

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  • Posted

    Hi. I hope your daughter has fully recovered. Did you send your daughter to school when she had HSP? That's one of our dilemmas right now. My son has missed a month of school. He went to school for a couple weeks. When he does, the swelling, joint pain, and rash gets worse - maybe from running around or sitting down for a long period of time. We don't want him to get behind in school but at the same time, we want his symptoms to get worse.
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  • Posted

    Hi, hope your son is better. School is a problem especially with sports he might not feel like doing them, could get tired, irritable which makes matters worse. Often in school I'd start the day fine but by lunch time was totally exhausted and in pain. This made school very difficult at times. In those days my parents made a arrangement where by I simply was allowed to go home. This didn't go down very well with the school but given the fact I'd spent nearly a year off previously with many months in hospital as far as they were concerned it was fine. I'm not suggesting you do this but perhaps some little understanding needs to be given from the school as to the severity and ongoing issues related to hsp which is at the end of the day a very very rare type of blood disease more commonly described and understood when you say vasculitis type disease. Hope this helps
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