Any advice on dealing with HSP?

September 27, 2006 2:30 PM

Has anyone had any experience with Henoch-Schonlein Purpura (HSP)?

My 4 year old daughter was diagnosed with HSP (aka anaphylactoid purpura) over the weekend. I understand there isn't much to do but wait it out and give her Tylenol, but I'm hoping that someone else has dealt with this and has some tips for dealing with the stomach and joint pain. Also, if you've dealt with it, how long did it last? I've been told it can take anywhere from a week to a month to clear up. Any info would be appreciated. Thanks!

posted by jrossi4r to health (7 comments total)

Sorry no direct experience, but you could try posting on the urbanbaby.com message boards. It's a forum for parents (mostly mothers) and is very active (though you may have to wade through a lot of posts about what's on tv tonight). I recommend posting in the early afternoon for the most attention. Good luck to both of you!
posted by cocoagirl at 5:34 PM on September 27, 2006

WOW! I had HSP when I was 7-years-old and you are the first person I've ever "met" who had experienced the disease besides myself (I'm now almost 33).

My main symptoms were:

- Vomiting

- Swollen joints to the point where it hurt just to move

- Rash (red dots) all over my body

Since I was so young I'm not sure I have a ton of great info except hazy memories. I remember my doctor putting me on a strict 7-UP/Ginger Ale diet (no solids) for a period after the vomitting started to get out of control.

I don't remember being on any medication, but I remember at one point having to go to the doctor to get a series of shots (one every twenty minutes for an hour or so), but honestly don't remember what sympton that was supposed to cure.

The good news - it went away in a week
posted by The Gooch at 5:57 PM on September 27, 2006

My sister got this when she was 6 and I was 9...so I don't remember that much. But I do know that she had several episodes over the years, always when she was tired or stressed and the first symptom was the puffy bruising around her knees. She's now in her 30s and not bothered by it any more.
posted by Biblio at 8:07 PM on September 27, 2006

I know someone who had that. He said he got it from handling egyptian artifacts. He got better after about a week.
posted by Mr. Gunn at 9:50 PM on September 27, 2006

My 3 year old daughter had HSP last year - you have my sympathies - She had it for 10 days, then about a further week for all skin traces to clear up.

Her joint pain lasted for a month or so, and, a year, on she still has more 'moments' than can be allowed as coincidental where she has aches; for example on a day where not a lot of physical activity has taken place.

We continued the urine testing for 6 months under instruction with regard to the potential kidney damage, fortunately with negative resullts.

The biggest annoyance for us was that the hospital were unable to do better than diagnose menningitis (sp?) despite the fact that 98% of the bruising was below the waist. It actually took me finding out what it was from the web before the doctors started paying attention - they were so determined it was Mgtis. they wanted to perform a lumbar puncture. (this after their (admittedly short) initial concern that it was child abuse - the bruising really is horrific isn't it)

Final words are that whilst it looks, and is, uncomfortable, 'normal' treatment using pain relief (calpol / child nurofen) toys, love and ice cream and 'steeling' yourself to not making a big deal out of it will be the best that you can do I think. (IANAD, just a Dad)

Give 'em a big hug from me ;)
posted by DrtyBlvd at 2:47 AM on September 28, 2006

DrtyBlvd: One of the things I remember about when my sister was sick was the scary diseases the doctors kept throwing out there while they were trying to diagnose her. I remember being in the 4th grade play and worrying about my sister the whole time because she wasn't there - she was in the hospital being tested for Leukemia.

One side effect I had forgotten: my mom had to make explicitly clear to my sister's teachers every year that she sometimes had unexplained bruising on her legs and arms and that it was NOT child abuse, but a medical condition.

Best of luck to your little ones. Here's a picture of my gorgeous grown-up healthy sister today.
posted by Biblio at 7:39 AM on September 28, 2006

Thanks for your answers, everyone. We were lucky that the ER doc knew exactly what it was right away. Still, it's weird to have a child with purple legs whose vomitting blood and be told to just give her Tylenol. Glad to hear that everyone in this thread recovered fully, though. That helps. And Biblio, your sister is lovely.
posted by jrossi4r at 9:25 AM on September 28, 2006