Henoch-Schonlein Purpura

My 14 year old Son has just been diagnosed with HSP Henoch Schoniein Purpura he has the spots only no other symptons he has had the spots for a week and spent a whole day in hospital having tests. Does anyone know the next step what will happen and when? We have a Doctor appointment next week but dont know what else is going to happen and when ? Has anyone just had the spots and then they go or will he have other symptons ? Has anyone got another 14 year old child my Son could talk to ? Thank you

Edited November 18, 2010 at 5:31 pm

Report post

12 replies. Join the discussion

I'm sorry to hear about your son, I too have a son with HSP. They will probably try treatment with Prednisone it's the most common first approach. In it's typical course it should last no more than 12 weeks and it will ebb and flow during that time. I hope your son's case is typical and he moves into remission. There is the possibility that it may flare up again down the line and need to be treated again. Don't be discouraged it's usual course is relatively mild although it won't seem that way to you both.

My son has an extremely rare form and we've been living with it for 5 yrs now. That's why I'm encouraging you to expect the best and hopefully he'll respond well to the Prednisone if that's what they try. With my son physical exertion and stress exacerbates the Purpura also he will need to stay well hydrated that's very important.

There have been several other posters here who have experienced themselves or with their children.

Clara

Report post

Typical symptoms include palpable purpura (small hemorrhages in the skin), joint pains and abdominal pain. Most cases are self-limiting and require no treatment apart from symptom control, but the disease may relapse in a third of the cases and cause irreversible kidney damage in about one in a hundred cases.[2] The exact cause of Henoch–Schönlein purpura is unknown, although it may occur after certain viral and bacterial infections, as well as an adverse drug reaction to some medications.

Report post

Everyone is different with response to these kinds of things. You can't compare your son to any other case and think he will have the same symptoms.

Report post

I have HSP and have had 18 outbursts since July of this year. I know that Alcohol has caused some of the break outs as that was pinpointed, but I have avoided alcohol now and I am still breaking out everywhere.

Pain follows the break outs, as if I have full body flu with out the fever and sinus.

I went to ER three times and to my MD about the same. I get kidney tests to make sure kidney function is ok. As long as those are ok, the rest can be covered, so I don't always look like a walking disease.

This last time was out of the blue and I have NO cause that I can find and no changes in what I do... other than avoiding alcohol. (I am 44 and this is my first time coming down with this).

They placed me on Steroids once. Which made me feel terrible and to be honest, I don't think it helped a single bit.

These spots sometimes are flat, and sometimes are raised, pending the pressure underneath. Seems when they are raised, they do itch. Some of them are sensitive and some feel no different than if they weren't there.

It's more the ache's that come with it that bother me the most. I am alergic to narcotics and I cannot take any nSAIDs, so I have to use regular tylenol, or go to ER for shot.

I have thought about seeing a pain management specialist. As 18 bouts of this since July is crazy. This means I get it about once a week.

All I can do is post what happens to me. I have no suggestions other than pain control and healing prayers.

Blessings to your son and I hope he doesn't keep getting this.

Jill

Report post

Check out gluten as a possible cause of the rash. Avoiding gluten, dairy (casein), and soy has made my husband's rash go away. He's a real mystery case and was never actually diagnosed with HSP, but after all the research I've done, I think he had it... just wondering if the gluten sensitivity caused all his rashes, blood and protein in his urine and a multitude of other symptoms.

Report post

Jill my son didn't respond to the oral Prednisone but did to the intravenous Prednisone when he was hospitalized the first time for two weeks. That's why they're trying the Methylprednisone now. He also experiences the itching on the raised ones. I'm crossing my fingers he responds well to the Imuran, nothing else has worked so far.

Report post

Please do keep me posted. I am praying for him.

I am having surgery and will be fasting for some time. (gastric bi-pass) so I will be basically starting over with foods. I will let you know how the cleanse goes and how if affects my HSP. If I go a week and no break outs of further, it will be posted. My sugars will no longer be involved, we will see if I still have bouts. I do have high blood sugar. That has just been recent though.
We shall see.

Blessings~

Report post

Wow, Jill03. It will be interesting to see how you do on your fast/cleanse to see if your HSP improves. My husband's rashes would come and go until, after trial and error, they disappeared when going on a gluten, casein, soy free diet. Let us know how you do and good luck!

Report post

I sure will~
In the meantime, stay positive.... and keep moving. I noticed with the pain, if I stay moving around, I ache less. (or the brain is occupied from constantly feeling it)

Day 1 - Optifast starting now. (13 to go, and surgery)

Blessings~
Jill

Report post

Thank you for your information very kind of you. Its been nearly two weeks now and the spots are still the same. He has been having mild pain in this feet and legs and a bit of pain in his stomach. The Dr suggested paracetamol and just wait till it gets worse or improves. Tests every week and visits to the hospital but he is taking it well and we are going with the flow, it could be a lot worse and we are thinking positive. Hope that you have good luck as well K.

Report post

My husband has been dealing with what we feel is HSP feel so lost it seems there is no right answer. One place says go see this dr another place says go see this place. I just wish we could get this under control with reading all the post I feel that his is to some point a more mild case. He feels worse when hes rushing about or on his feet all day. We have not tried any of the stuff like Prednisone yet. They want us to wait to see a Rheumatologist and we are worried that she isnt going to be able to do much for us. Its been tough trying to keep his spirits up and help him not be frustrated.

Report post

Mik is now seeing a rheumatologist at loyola Universtity in Chicago and the first thing she wanted to do was put him on the Methyprednisone this time he responded and all the purpura have receded for now except for his ankles and feet. I have no idea if the Imuran is doing anything yet but he is tolerating it well

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do