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HSP - alternative therapies? and how long to it leaves permanently?

Posted , 36 users are following.

mary55774
mary55774

Hi all. I came online for answers re HSP, but this seems as close as you get to anything! My 13 year old son came home from school in December 2012 with a rash that looked like the meningitis rash on his legs. I took him straight to A&E where they treated him for meningitis as soon as they saw him. A few hours later a doctor came around and said that she believed it wasnt meningitis (thank God), but that it was HSP. (She had had it herself as a child and recognised his symptoms as soon as she looked at him, which led to fantastic care as she knew what to look for). She kept him in hospital for 3 days and the rash died down, and the pain in his knees also subsided. He was sent home with a box of urine sticks which he had to use everytime he went to the loo, with a message to bring him back if his protein was high. It was invariably +++ protein every time. He was in and out of hospital regularly getting bloods checked etc, poor fella said he felt like a pin cushion. Short note version, they were keeping an eye on his creatinine level which should have been below 50, his rose to 220 and then they eventually carried out a kidney biopsy to make sure there was no permanent damage.

The rash still comes back regularly, and always seems to come on if he's feeling at all unwell. Today, for example he has a sore chest, and the rash is back again. It seems his immune system is the problem here. The first time he caught this he was just starting an antibiotic for a throat infection. The second time the rash came back he had a sore throat again. I came online to see if there are any alternative therapies I can try, he's sooo fed up with all this, and in the middle of GCSEs and could do without all this. We're up with the Head of Renal in the Children's Hospital next week again so I'll ask her when I see her. He's never been prescribed a single thing for this since taking it, so if anyone has any suggestions, I'd love to hear them. The doctors are obviously concerned with keeping his kidneys healthy, and rightfully so, but I'd like to try and tackle it from this side to stop it happening. Also, if you or your child has got out the other side of this, I'd love to know. Something positive would be great. Thanks, Mary

1 like, 63 replies

63 Replies

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  • kelly22284
    kelly22284 mary55774

    Posted

    Hi mary

    thank you for replying. When you are a parent sitting don't know which way to turn it's always nice to hear from someone that's been there and come through it ok. I know you hear that from the doctors don't worry it will go in time but it's more heart felt from another parent. Did your son have the acupuncture or change his diet in anyway ? 

  • dave42500
    dave42500 mary55774

    Posted

    Hi don't know if this thread is still live But my son Lewis 13 has had HSP for a month now he is now diagnosed as HSPN  still unsure how much kidney damage but should find out over the next few days about 12months ago he was told he had asthma  and been using his inhalers a practice nurse recently told us he should always have a drink  after using the inhalers to prevent throat infections which he seemed to be getting just wondering IF any others are asthmatic  cheers Dave
    • shell09973
      shell09973 dave42500

      Posted

      Hi...how is he doing. We just heard ours has hsp. She's 13. How can we stop this from coming back.

  • Cinders68
    Cinders68 mary55774

    Posted

    Hi Mary, my daughter was diagnosed last September 2015. The care she received from both Northampton General and John Radcliffe left a lot to be desired! She is now under Great Ormand Street and since last November till Feb this year she was on 30mg steroids and 2000mg MMF none of which have helped the HSP or the nephrotic syndrome that has developed although the vomiting did subside for a while but the rash came back full force mid Feb 2016 and the vomiting back to at least once or twice a week, when the steroids were stopped and the MMF were stopped too. Having said that at least her bloods are okish. There is good kidney function and creative is at 60 and albumin is at 30 however due to the excess water caused by the steroids and HSP she has gains 20kgs in weight which is a tough ask for any teenager. She still has +4 for blood in her urine and +4 for protein. I have done so much research for HSP and from what I can find there is no cure, just time. It really is soul destroying watching your child suffer. We spent 10 weeks in hospital from Sept to Dec last year and it's going to be a long time till this horrid virus goes!
    • shell09973
      shell09973 Cinders68

      Posted

      Hi!! My daughter was just diagnosed as her rash being from hsp. From our skin dr .I had no idea it could reoccur or urine protein etc. What else can we all do. Does it get worse with age etc .She's 13 .Thanks .

    • Cinders68
      Cinders68 shell09973

      Posted

      Hi Shell09973

      We are now a year into this virus and last week my daughter had a flair up. Since the end of March 2016 it was all fairly good. Suddenly throat infection, HSP and vomiting came back, albeit within a week thr HSP rash has gone and vomiting stopped. There is no light at the end of the tunnel as no doctor knows why it starts, how to get rid of it as it comes and goes as it pleases and the worst part, no doctor out there is interested in finding a cure as it takes up too much of their time and they are not paid enough! All meds we have been told at GOSH are trial and error and the side affects are a bi product and chances of them working are slim, but as my daughter's consultant keeps saying, he doesnt want to do nothing. However the drugs themselves will also help deteriorate the kidneys, so your in a no win situation. A year on my daughter still has +4 blood and +4 protein in her urine and now a second biopsy is being sought.

    • Cinders68
      Cinders68 Edwson

      Posted

      Waiting for dyalisis and a change of hospital!
    • Cinders68
      Cinders68 kacy89887

      Posted

      Hi Kacy..... tbh we spent 6 weeks at GOSH from may to July 2017. It was awful. They don't know what they are doing and they called social services on us as we wanted a plan instead of subjecting my daughter to trial and error drugs and still accusing my daughter of faking her vomiting or worse still I was making her vomit.

      For 10 days we were monitored 24/7 and when their meds didn't work and she was vomiting they tried to just send us home saying that was how it was! Luckily I wasn't born yesterday and managed to use ss to our advantage and a plan is now in action for each week.

      Prof R did ask me what I mentioned by a plan... and she's the academic out of the two of us. Fortunately I was able to come down to her level and explain in a format of English that she was able to understand that you tell the patien the truth of what you are going to try and do and then see what happens.

      Her way is administer drugs and at the end of the week see what worked, or not in our case and try again with more stuff the next week.

      Luckily she is on holiday and we have had a new consultant who actually listens and now my daughter is on a potassium free diet and yeast free and meat and fish free, her levels are really much better and dialysis has been pushed back these past 2 weeks. Why wasn't she told that a stricker diet could help her?

      Oh just found out how much extra money they get if she is dialysis versus diet. So in essence we are living week by week having blood tests and fighting to push back the need for dialysis.

      We can't go to BCH which is now academic as my daughter does not want a transplant, she will wait until the artificial kidney comes along in the next 10 years as her HSP two years on is still around and my kidney would be attacked so no point.

      It doesn't really matter where she dialyses as the machine does the work not the doctors or the nurses!

  • Magstah
    Magstah mary55774

    Posted

    Hi Mary. I am a 60yr old living with HSP, and in the middle of a bout now. I have never found an actual alternative remedy, but I have found that eating as naturally as possible -  no additives- avoiding coffee, alcohol, stress, fizzy drinks, dairy cheese, and ensuring enough water and vitamins are in my diet helps enormously. Of course, I never actually keep up with this all the time! A fizzy drink alternative might be something like a juice or sparkling water with or without a little taste of something in it 

  • barbara37852
    barbara37852 mary55774

    Posted

    Hi Mary sorry to hear about your son . My three year old grandson was diagnosed with HSP itch slight kidney involvement and swollen arthritic ankles  earlier this year . His trigger appears to be a strep throat / tonsillitis  like your son . There is no cure for HSP as it is an autoimmune disease ( the immune system attacks your own body )  they can only help ease the symptoms  as and when they occur , depending on the severity and which part of the body is affected . Treatment varies hugely , depending on where you live . For instance we were lucky enough to have a nephrologist  who trained under someone who is an expert in paediatric HSP in the UK . She said all research showed that steroids were seen to have no great benefit at all in treating HSP and were only ever used when there were serious gut  problems and acute pain along with it  , they can also carry serious side effects when taken long term . Ibuprofen should not be taken when there is kidney involvement as this can  make it worse . Paracetamol  is ok for joint pain  and that is it . in the USA however , steroids appear to be given routinely . We consulted a holistic dietician to see if it would help and can honestly say that it made a tremendous difference to my grandson very soon after starting the diet . No wheat , no potatoes , no sugar . No pork products or bananas or nut products Only organic grass fed beef , organic chicken and all fruit vege and other foods must be organic . He also takes homeopathic remedies and has a special massage each morning and night . Before this he had a permenantly running nose , rashes and dark shadows under his eyes . He'd wake up screaming in the night with nose bleeds and nightmares and his ankle and knee joints were very painful . Within days most of his symptoms has disappeared and now he is back to his normal lively self . We only have one more check up in six months time with his nephrologist , who said if he is still clear she will sign him off . We still check urine once a week with dipstick to check for protein and blood to make sure no re iccurance of kidney problems . Every case is unique with HSP which is why there is no , one treatment fits all , answer . I sincerely hope your son gets better soon . Kind regards 

     

  • ashley54114
    ashley54114 mary55774

    Posted

    I have hsp, had it for over a year, it killed my kidneys really fast, I rash out bad alot, it hurts very bad, I have dialysis 3 times a week, if you hear of any positives I would love to know, I'm a 32 year old female

    • Cinders68
      Cinders68 ashley54114

      Posted

      Hi Ashley

      So sorry you had HSP so bad.

      Which part of the world are you?

    • Cinders68
      Cinders68 ashley54114

      Posted

      Hi Ashley54114

      How are you doing?

      Have you had a transplant?

      Whereabouts in the world are you?

      as we are in the UK

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