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Pediatric HSP - Newly Diagnosed
My 8 yo son was diagnosed with HSP about 3.5 weeks ago. Our pediatrician said it would go away in 4 weeks, but I’m skeptical this will just magically clear up. In the last 3.5 weeks, he’s had cyclical flare ups of his symptoms, each flare up different from the last. He will be fine, running around, rash disappearing for several days. And then suddenly he has swollen feet or abdominal pain and the rash comes back splotchy, purple, and confluent on his legs. This seems like a never ending cycle of good and bad days each week. I feel so lost and like I’m flying blind in trying to manage his disease. I’ve poured over literature in PubMed, consumed case study presentations, and cannot find anything that describes well the course of this disease and pathologically how/when it clears up.
Does anyone have experience with this? Any support groups to join?What can I do to help this go away? Should we seek a specialist? Is this just life for him going forward? I just don’t see the end of this long, dark path and I’m looking for some support to make it through. Thank you everyone!
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@jmmiller28
Welcome to Mayo Clinic Connect!
I understand that your son’s illness is confusing - good and bad days.
Have you talked to your son’s pediatrician after the diagnosis was made? The doctor may want to see him again.
Here is a link to Mayo Clinic’s information on Henoch-Schönlein Purpura:
https://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/symptoms-causes/syc-20354040
As you see, rest is recommended- although it’s hard for an 8 year old boy!
The average duration of symptoms is a month, but it could come and go longer. The more serious symptoms such as abdominal pain and kidney symptoms- blood and protein- usually appear early on.
It’s not an uncommon illness among children even though parents never hear about it.
Just call his doctor to see if he needs to be evaluated again.
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2 Reactions@jmmiller28, I'd like to add my welcome. I'm tagging fellow members @jsimmons74 and @lmcazares, who have shared about their child's journey with Henoch-Schönlein purpura.
You may be interested in this related discussion:
- Damage to legs from Henoch-Schonlein purpura? Stumped the doctors: https://connect.mayoclinic.org/discussion/teenager-damage-to-legs-from-hsp-stumped-the-doctors/
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1 ReactionThank you for the reply, it means a lot to me. Yes, he is under the care of a pediatrician and we speak weekly regarding his urine results and blood pressure. All has been normal thus far. I don’t get the sense that there is urgency by the pediatrician to see him again, and instead just an expectation that this will resolve “at some point.” We were told likely 4 weeks, but we are past that point and he continues to suffer through cycles of rashes, joint and abdominal pain, and fatigue.
Thank you for sharing this resource!!