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HSP...the ongoing saga

Posted , 8 users are following.

steph76194
steph76194

My daughter then 12 was diagnosed with HSP a year ago...horrific meningitis like rash appeared post severe respiratory infection. For us its the aftermath, trying to explain wwhy she has so much time off school, keeping up with sch work, endless high levels in protein and blood, joint pain, horrific abdominal pain....she is so over it and so am I. Great consultant but an appt every 3 months is just not enough. Have seen cover doctor in the surgery last week as my girl has been ill now for 12 days and the doctor was useless telling me HSP doesnt affect your immunity!!! I mean for gods sake...her immunity crashed that is what started it. Feeling desperate....when will this rubbish time end for her and me!!!

1 like, 31 replies

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  • stacy17947
    stacy17947 steph76194

    Posted

    Steph, I'm discouraged by your post. My 9 year old son was diagnosed with HSP 3 weeks ago. We've had 2 hospital stays and 4 emergency room visits. He's had severe stomach pains, joint pains to the point that he couldn't walk for almost 5 days and that tell tale rash. He's on steroids and all symptoms seem to be at bay. He's being weaned off of the steroids and I'm so concerned that his symptoms will come back with a vengeance. I'm surprised to hear you've been at this for over a year and I empathize with you deeply. Has your daughter been on steroids? Can you tell me more about the process you've been through?
    • steph76194
      steph76194 stacy17947

      Posted

      Hi Stacy,

      Your poor boy sounds like he has really been through the mill. My daughter became ill last january and I cannot lie it has been rubbish since. Backwards and forwards to hospital...on and off drips, abdominal cramping and the joint pain has been the worst for her. The rash was horrific but disappeared after 3 weeks...she gets one or two spotty areas but as i say the almost arthiritis pain and awful cramping is the worst. If anyone has a cold she goes downhill....14 months on and the situation is still periodically bad. This time she has been ill for over two weeks, obviously one week was half term but she as of today is on her 6th day off school. She is extremely fatigued and crampy still. So i will endeavour to book into the phone clinic with the consultant....which could be a week away. She has been on blood pressure tabs and steriods...both have reacted badly with her. But i think we need steroids now to stop the cramping....paracetamol has not helped at all. Good luck , have heard the younger the patient it is helps in recovery time. We were told she would be monitored for 3 years.

  • lucynewas
    lucynewas steph76194

    Posted

    There seems to be a big difference between treatment protocols in USA and UK. My 14 year old daughter was diagnosed with HSP on 1 October last year. She still gets the abdomen SMS joint pains but less frequently now. She finds antihistamines helpful when the rash flares up. And take ibuprofen - but I'm concerned about her taking that long term. Her symptoms seem to ebb and flow.

    Protein in her urine is here to stay. GP is not sure if that's normal for her coz it's not something they check routinely when they're well.

    It's affected her mood especially when she feels generally unwell.

    The important thing is to continue to monitor for symptoms or changes in kidney function.

    I had never even heard of this but it would appear to be auto immune. We have a family history of arthritis and I'm now convinced it's linked to that. I was in hospital for 3 weeks as a late teen with a post viral illness that could have been HD7 - with the benefit of hindsight. ..

    • lucynewas
      lucynewas

      Posted

      Typos:

      SMS - and

      HD7 - HSP

    • steph76194
      steph76194 lucynewas

      Posted

      Hi Lucy, great to hear from you. We were told absolutely no ibuprofen as this condition affects the kidneys and could cause more damage so that is interesting. She takes antihistamines for hayfever but for her the rash is under control .....it is everything else. I will try and get through to the hospital/consultant today. Feeling so sad for my daughter....:0(( not a good day.

      Take care...best of care to your daughter. X

    • lucynewas
      lucynewas steph76194

      Posted

      Dear Steph

      You could also ask about probiotics for immune boost and rosehip for inflammation. There is strong NHS evidence that rosehip is at least as effective as anti inflammatories. If you search on the NHS website you will find a link to their evidence review.

    • steph76194
      steph76194 lucynewas

      Posted

      Dear Lucy,

      Thanks for that I will ask...really helpful.

      It is so nice to communicate with other families going through this...I had never heard of it before my daughter became ill. I was told 1 in 20,000 get it mostly boys under 10...but the more I am hearing makes me think these stats are outdated!!

      Thanks again

      Steph x

  • helen68675
    helen68675 steph76194

    Posted

    Hi Steph

    This just proves not all doctors know about HSP, you're right it's an auto-immune disease, goodness I would've been furious! Has her illness anything to do with HSP or has that fully gone now?

    I'm interested to know how long she suffered with it, my son has had it 14 weeks, still has intermittent joint swelling/pain, occasional abdominal pain, rash still there, protein & blood in urine, we have bi-monthly hospital appointments. School have been understanding but he can only manage a couple of lessons a day, but he's in year 10 & needs to be in as much as he can really but then gets tired and needs a day or two off.

    It's a very frustrating time for him.

    Helen

    • lucynewas
      lucynewas helen68675

      Posted

      Dear Helen

      My daughter is in year 10 too. I've been using the graded exercise therapy programme designed for CFS to help manage her stamina combined with a symptom diary app on her phone.

    • helen68675
      helen68675 lucynewas

      Posted

      Please can you give me more info on the programme for CFS & app details.

      Thank you

      Helen

    • steph76194
      steph76194 helen68675

      Posted

      Hi Helen, your poor son....I have a son in year 10 as well so I know it must be tremendous pressure for him having time off. My daughter became sick Jan 2015 ..so we are 13 months in...the reoccurrances or flare ups are periodic and I think, or want to believe, are getting further apart but this current episode has knocked her completely. From my research it seems that it will flare up every so often and frankly there is very little anyone can do medically except monitor. The school have been great but she feels sad at missing her friends and not being able to do much sport has been a killer as she used to be so sporty and active. The increase in sport rushes the blood to the kidneys and as hers don't filter now as they should , the protein becomes stored. We are told by the hospital that the +3-4 in blood is not a problem but sge regularly has +3-4 in the protein. She is washed out but a faint glimmer is that I started her on multi vits as that locum was so stupid and ill informed and both my daughter and I think this may have made a difference. I guess it's not rocket science if you have poor immunity you have to boost it anyway you can. I could not believe the dismissive attitude of this locum and I will report my feelings back to the practise manager when I have sorted out my daughter....thankfully I am proactive and articulate to question but what about people who don't have an advocate and who accept doctors like that. Could be serious if left untreated/monitored. If I wasn't in my late 40's I would retrain as a doctor!!!!

      Best wishes to you and your son.

      X

    • helen68675
      helen68675 steph76194

      Posted

      I have accepted it will come and go for some time & we basically take each day at a time. School have been understanding, fortunately Matty's a bright boy and should be able to catch up when he falls behind. Like your daughter he is very sporty, obviously no football for him at the moment, he plays cricket too and for district - I sincerely hope he can play in the summer even just part of a match. One of his GCSE's is PE, his teacher has said for him not to worry as practical assessments start April next year - fingers crossed he's back to full fitness by then.

      His blood is +3 & protein +2-3 apparently his kidneys are functioning as they should be so just need to keep monitoring.

      It's such an awful illness & takes ages for it to go, anyone would feel down & I understand why your daughter can feel fed up.

      Matty is having probiotics & multivitamins to boost immune - as a parent you do anything you can to help, repair & manage the illness along the road to recovery.

      Best wishes to you & your daughter

      Helen

  • amy32786
    amy32786 steph76194

    Posted

    Research says a child age 12 should have HSP signs/symptoms for up to 1 month or so then it will disappear. I do hope this is the case for your daughter. My soon to be 22 y/o daughter fought this disease for 2 years and still has some crippling  arthritic symptoms and stomach pain as well as severe weight loss.
    • steph76194
      steph76194 amy32786

      Posted

      Dear Amy,

      How awful for your daughter...that really has been horrific for her...and you.

      My daughter was 12 but apparently had a very bad attack when she was initially hospitalised...and so for the last 13 months she has had constant relapses...this last 2 weeks have definitely been the worst so far since inital diagnosis. Thankfully her consultant has been in touch today and is very much on the case. I cannot fault her treatment at our NHS hospital. I wish your daughter well. X

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