1. Community
  2. Blood & Immune System
  3. Henoch-Schonlein Purpura

Hi all, my 18yr old son has recently been diagnosed with this condition

Posted , 4 users are following.

jennymoulton197
jennymoulton197

My 18yr old son has just been diagnosed with this condition following a serious kidney operation. I can only assume he caught some kind of infection?. He has been really poorly severe stomach pain no appetite and a terrible rash and has been hospitalised 3 times with doctors just stating he had an infection and sending him home this time for 4 days (still there) but at least diagnosis. As he already has a problem kidney just had 60 stones removed and numerous still there I was wondering if I need to be concerned. Any advice would be appreciated as we are very new to all this. Many thanks Jenny x

0 likes, 19 replies

19 Replies

  • harleycw
    harleycw jennymoulton197

    Posted

    I'm not sure there is enough information to really provide much guidance.  The trouble with this disease is that it is merely a description of a set of symptoms.  It is not really clear what causes it, although it does seem to get divided into 2 main and then a few lessor categories based on the types of symptoms and which drugs prove effective.  Often times whatever the cause, it does follow conditions that would weaken or bring on the immune system.  Generally speaking, talk to multiple doctors, keep researching this and his specific symptoms and what drugs work.  Track what he is exposed to including foods.   Listen to him and give him opportunities to rest.  I've tried to build up the body to make it stronger, but really this led to relapse most times and the strategy that seemed to work was just to get ample rest first weeks after you think the symptoms are clear, then slowly ease into exercise again.   It's really rough for him so good luck and keep posted about it so we can all share more information.

    • jennymoulton197
      jennymoulton197 harleycw

      Posted

      Thanks Harley we have been given no information so far but like I said my son is still in hospital so I will definitely be asking questions before he comes home. The doctors don't seem very concerned at all really but my worry is his ongoing kidney problem as it's looking likely he will have the problem kidney removed so we really need to keep the other one healthy. My son is suffering with severe stomach pain that's what they are trying to control at the moment. Thanks for your reply and I would be grateful of any information or suggested sites to look at.

      Jenny

    • harleycw
      harleycw jennymoulton197

      Posted

      You should definitely read the studies and talk to your doctor.  The studies I read is that prednisone usage had a correlation with lower incidents of later internal organ damage.  However, again it depends on what type of issues he has, etc.   Keep asking your doctor lots of questions.  I went to many doctors and it is unbelievable how many know nothing about this and even contradicted what I researched and finally when I found the correct specialist he knew and confirmed what I thought immediately.  He was an immunologist.  Good luck !
  • rocky31676
    rocky31676 jennymoulton197

    Posted

    Did they say what kind of infection your son had... EBV/CMV/hepatitis? 

    With HSP, as the blog say here, you can try painkillers which are not of much help and with kidney disease it is not recommended to be in high dose. For the skin rash, try Eumovate/betnovate. Did the doctors provide any medicine for HSP?

    • jennymoulton197
      jennymoulton197 rocky31676

      Posted

      Hi no one has said what kind of infection He has they have been giving him morphine, IV paracetamol and Tramadol, Today they have just reduced it to paracetamol and Tramadol as he was supposed to come home today but they changed their minds (he did have a urine test so maybe that flagged up something) hopefully he will be home tomorrow I just want to know what to expect symptom wise if you could help?

      Jenny

    • rocky31676
      rocky31676 jennymoulton197

      Posted

      The urine test might show blood or protein the doctors will need to manage slo. This is the main concern with HSP. Other symptoms of severe abdominal pain is also a concern, as would be joint pains.
  • rocky31676
    rocky31676 jennymoulton197

    Posted

    Also, try the elevating the legs is there is much swelling there.
    • jennymoulton197
      jennymoulton197 rocky31676

      Posted

      Thanks he has no joint pain at the moment just stomach pain so I suppose thats a positive! Can people get joint pain later or is looking like he will get away with stomach pain? The rash is turning into a purple looking bruise so I assume thats going as well, is this likley to return? sorry for all the questions my son was released today with no information al all!! 
    • rocky31676
      rocky31676 jennymoulton197

      Posted

      Joint pain is always a possibility. Its good sign if he does not have now. 

      Stomach pain ... is it lower abdomen pain ? 

      Rash is atually purple in color.

      HSP (henoch schonlein purpura...the purpura is... latin for purple)

      No one can tell if it will return.

      For some it has returned ater many years, that is why the cause should be detrmined and eliminated...example what type of infection/drung/chemical caused it.

  • cathbrad
    cathbrad jennymoulton197

    Posted

    Hi Jenny,

    ?My 18 year old daughter was diagnosed with HSP early December and although she is lucky in that her stomach pain subsided and the swollen joints seem better, her rash is relentless and last night spread to her arms and abdomen.

    ?She is at university, so it's hard not being there for her, so I am doing as much research as possible, so thank you for posting. It seems most cases are in children, so i would be grateful to hear anything you are advised to do.

    ?Can I ask if the doctors said the HSP is because of the kidney operation itself? My daughter had an operation in May, but it wasn't for her kidneys. I just wondered if an infection may have caused the onset of HSP.

    Your poor son really is having a tough time. I hope things improve for you soon. Catherine.

    • rocky31676
      rocky31676 cathbrad

      Posted

      Your right. HSP may have been caused by infection during the kidney operation. But the physicians dont really think about the cause, which is sad because HSP is so painful and debilitating. 
    • jennymoulton197
      jennymoulton197 cathbrad

      Posted

      Thanks Catherine, they never said it was caused by the operation but he contracted an infection 2 days later I believe this was when he contracted it and that was confirmed by our GP today as my son's rash is soo painful at the moment we had to return for some antihistamines, it had subsided dramatically as well but it's back worse than ever but the stomach pain is not present today thank godness! It's a Shame no one explains everything to you we're told nothing thank God for this site.

    • jennymoulton197
      jennymoulton197 rocky31676

      Posted

      Thanks Rocky I deffo think it's due to his operation as he was fine until then. He has had a week pain free and the rash died right down but today the rash is soo bad we have been to the GP and is burning on his legs and feet it looks like he's been burnt! The GP was good and researched things whilst we were there testing his urine and thank goodness no protein in it just blood which means his kidneys aren't in trouble at the moment. Our GP wants to test again in a week but it's the rash that's causing the pain now? Is it normal to get better then get a lot worse in about a week??

    • rocky31676
      rocky31676 jennymoulton197

      Posted

      Yes, that is the nature of HSP. The rashes that appear periodically are called flares and may aggravate the joints too, particularly the knees. Ask your GP to get a topical steroidal lotion for the rashes, but use it only on legs. Any abdominal involvement since there is some blood in urine?
    • jennymoulton197
      jennymoulton197 rocky31676

      Posted

      Stomach Pain a couple of days ago but none at the moment, the blood could be due to his operation on his kidneys or the stent he had removed last week so he is going to have a blood test and urine test again next week to check his kidney function. The rash is severe at the monent especially on his feet but he has never had joint pain so that's one blessing I suppose.

    • cathbrad
      cathbrad jennymoulton197

      Posted

      Hi jenny. How is your son doing?

      My daughter is back and forth to GP as is generally unwell. They are going to a biopsy soon if things don't improve.

      I hope things have settled for your son.

      Catherine. X

    • jennymoulton197
      jennymoulton197 cathbrad

      Posted

      Hi Catherine, nice to hear from you. My son has had 2 flare ups of the rash since we last spoke but has been rash free for 3 weeks now so that's a blessing. We have an appointment with his kidney consultant on 20th March where we expect a date to be given to remove his damaged kidney. I just hope the HPS has gone because that would be dangerous for him if he only has one kidney if that one gets damaged and he still has HSP they won't consider a transplant as it would just do the same the that one. We are keeping positive though sorry to hear your daughter is still not well it's heartbreaking when you can do nothing for them and even the doctors are clueless. I hope she starts to feel better soon, take care of yourselves keep in touch

      Jenny x

    • cathbrad
      cathbrad jennymoulton197

      Posted

      Gosh Jenny, your poor son - and you!

      You are right about the doctors being clueless. It's a mystery for sure, which is why I get frustrated with it.

      Fingers crossed for you. Keep me posted.

      Catherine. X

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.