I'm betting most of you have never heard of Henoch-Schönlein purpura (pron: "hen-awk shern-line purr-purr-ah"). Well neither had I, until my sister told me that is what her daughter has. I looked it up online and OMG, these poor people. There is no known exact cause and no known treatment.
Henoch-Schönlein purpura makes the blood vessels in your skin become irritated and swollen. Often called Vasculitis. When the blood vessels in the skin become inflamed, they can bleed. Causing a rash like look upon the legs, elbows, abdomen and sometimes face. HSP is thought to be caused by a person's immune system not fighting an infection like it's supposed to.
Some of the most severe cases cause bleeding out through the rash like bruises. It can also cause kidney failure. I think it is something many parents would want to be aware of, considering it effects 10 in every 100,000 children a year. I know that seems like a long-shot, but my niece is a twin and her sister shows no signs of it.
My niece went to the emergency room 4 times, a week, before being diagnosed by a doctor at Cook's Children's Hospital.
I was also wondering if anyone has a child who has this, had this or is still dealing with it. My sister is very concerned and worried as to the long term effects it could have.
A.,
Thank you for sharing your story. I am not aware of it. This is the first time I have heard of it. I hope that your niece will be okay.
Take care,
K
Hi there! My little girl (who is now 21 months old) got it in Sept. and was COVERED from head to toe (most of it on the trunk and arms, HEAD) and it was the most awful thing ever. We thought she was having a reaction to eggs b/c the hives were so bad that she had these huge bumps off of her head. She was white and didn't want to do anything...By the evening, she turned blue and we rushed her to the ER (we had seen her doctor at Cooks and he was monitoring her but we still just thought it was an allergy until she turned blue and began to shake, he wanted to to go to the ER right away) where we had a millioin test, she cried forever in pain(don't have a child who crys much)it was getting worse and the docs couldn't figure out what to do. She look like she had been severly beaten. They thought she had menengitis (sp?) so they did a spinal tap, x-rays, bloodwork, meds...nothing was helping. They ended up giving her a strong steroid and sent us home. We had to go in to the doc first thing in the a.m. where the whole office was shocked when they saw her b/c the hives were now black and blue (vasculitis, brusing under the skin). It was so sad. Not to go on and on but the vasculitis was so bad and her joints hurt really bad but there wasn't much else we could do but wait and monitor her. She is great now, shows no sighns of anything. We have her urine check every couple of months and she is doing so well! The good thing is that there isn't any long term problems with the kidneys and they shouldn't get it again. My docs said they thought it stemed from a virus she had had like 2 weeks prior and I think it took her 4-6 weeks to recover (the spots were gone in about a week and a half). It is so scary and I am sorry your family has had to deal with it. It's not contagious so im sure that's why the other child hasn't gotten it ya know? I sure hope she is feeling better! If your sister wants to hear more or just vent or whatever, I would be more than happy to talk to her on the phone or e-mail or whatever b/c it is scary and hard when a lot of people haven't heard of HSP. Just let me know and I can forward my e-mail or number! Good luck and I hope things get better soon!
As a school nurse, I've known 2 children with this and they recovered and are very healthy.
Ahhh, 3 little words we became familiar with just this last month! My 7 year old had had a full length cast on toe to high thigh for 6+ weeks, then a partial below the knee for 2 weeks that was water-proof. Three days after its removal, she got a little prickly/ heat rash on the top of her foot & ankle. It got worse over Sunday & Monday. When I picked her up from school Monday it was swollen & throbbing, the rash had spread, it was HOT & got more painful with sun exposure! I couldn't get her dr. after 4:30, so I went to our chiropractor, who does cold laser therapy. She lasered the area on various setting for pain & inflammation for about 20 minutes & during that time, the rash went from being spread about & heat rash-looking, to becoming very focused & looking more like a port-of-wine stain birthmark! We started considering a strep or staph infection that had been cultured under the cast. It was not as swollen or painful the next morning, but still warm, so we took her to the dr. & after doing blood & urine tests- to check kidney function- she said it was HSP & it just had to run its course. She explained it as an "allergic reaction to a viral infection." So, a viral allergy, basically. Within 2 days the rash color faded, and by the next day it didn't hurt any more. It can take 4-6 weeks to work out of the system, but is GENERALLY harmless. Kidney funtion is a concern though, and one website I checked said to retest the urine in about 6 mo.
What an education that was! It can reoccur, but is not guaranteed to ever flare up again.
The website I found w/ the best info was: http://www.aafp.org/afp/980800ap/980800b.html
D.
Hi A.,
I can't say for sure that this will help, but it can't hurt. I am an independent distributor for a product that has been proven time and time again in research studies published in medical journals to improve circulation and enhance the immune system. And it comes in a gummy treat or chewable tablet form for kids. For more info, have your sister call me or check out www.GoodHealthMadeSimple.com. I will pray for your niece's healing...
M.
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My cousin has a son who dealt with this in December. In most cases, it resolves without incident. He has been slow to recover fully and has some lasting kidney difficulties. The doctors do think that he will be fine, once everything clears out of his system. It just takes a long time to recover, and is a pretty miserable illness for all involved. I would just keep a close eye out for kidney issues. I'm sorry I could not be of more help. I think there is a really good full recovery rate for this illness. So,try to be encouraged!
Has your niece been diagnosed by a dermatologist or the ER physician? She needs to see a specialist....what area of town is she in? I am at Dallas Presby - web site is northdallasderm.com
S.
