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
Hi Mary,
Sorry to hear your son is having such a rubbish to me of it all. I've been told that when children have HSP it usually doesn't last that long.
The main problem with HSP is a defect in the immune system, the IgA antibody we have is over produced which makes it attack our bodies and kidneys in particular. I have been diagnosed with HSP and IgA nephropathy as a result. I have found that when I'm ill with colds or coughs, they last a lot longer and I do feel a lot more run down than how I used to. I eat healthier to ensure I get all my vitamins and nutrition in order to prevent feeling so unwell, it helps but it doesn't give a cure! As a vegetarian I was also given iron tablets because I was anaemic which probably didn't help!
When I had the rash constantly for 6 months to the point I was unable to walk or get by with day to day life because I was vomiting so much and my urine was constantly showing blood +++ with occasional protein the renal doctor put me on a two month course of corticosteroids in order to protect my kidneys from further damage and my rash has never been the same since, I have scaring and when I drink and eat or exercise excessively the rash comes back but never to he extent that I cannot get by on my regular day. However, I found the two months I was on the steroids unbearable, it was the only thing that made an actual difference but I have begged my doctor not to go on them again. That is probably why your son hasn't been prescribed them, I am sure they are a last resort medication.
I would however advise them as they made a massive difference, and at the time I was in my first year at university and was struggling to cope with workload being so unwell so I understand how frustrated your son is.
I do hope he gets better soon as I wouldn't wish such a horrid illness upon anyone!
Sorry I can't provide a useful remedy.
Best wishes, Zoe
Hi Zoe
Thanks for the reply. Yes, the doctor has always said that the steroid was a last resort - that's why she did the biopsy, just to make sure he didnt need it as she said it was stronger than treatment given to a cancer patient. I'm just wondering, other than his diet if there's anything I'm missing as his mum that I could be doing for him. I'm going to set up a couple of sessions of acupuncture, if he'll agree. Thankfully he doesnt seem to have had it as bad as you did, and my heart goes out to you. I hope you're making a full recovery. I may try a health shop at the weekend too - you just never know what's out there! Fingers crossed this goes away eventually, for you both. Take care. Mary
Hi,
My HSP started after a sore throat and I also get bad flare ups whenever I am ill. I'm interested in any suggestions anyone can offer because I haven't had any luck with drug treatments. I'm just about to start Dapsone - anyone had any success with that?
I'm playing around with my diet at the moment to see if I can work out what sets it off. I'm currently trying to cut out milk products. I'm finding it too hard to get rid of chocolate though...
I had to stop steroid treatment because the side effects were too bad. However, the HSP symptoms have got worse since so perhaps they did help the HSP a bit.
I have found dapsone to be incredibly helpful, I was suffering with achey joints and I was put on the steroids but they didn't seem to get rid of the rash! I then started using dapsone and the rash went within a dew days I was so grateful. I have been on it for a few months now and I am rash free I hope it stays that way, the rash really got be down. Hope this helps x
Spent day on children's ward as the rash is worse than it has ever been today. Did the usual run of bloods and tests, with blood and protein in his urine. Such a long day, to have the line at the end of it 'well as you know with HSP there's not much more we can do than monitor it'. And they're right obviously, but doesnt help any. Any how, up with Head of Renal in Belfast on Thursday so I'll know more then. To be honest his joints arent sore, it's just the rash and that run down look about him, and he's always cold, so I dont know if dapsone would be appropriate? I'll mention it anyway and see what they say. Hope to start acupuncture for him next weekend, will go weekly for a while and if it makes a difference I'll let you know. I've had acupuncture myself for carpel tunnel syndrom and it really works wonders, so I'm daring to feel hopeful! Need a chat with my accupuncturist first (was a complete sceptic on this but thought I had nothing to loose so gave it a go). Anyway, take care.
Hi Mary
Heart goes out to you, my 13 year old was diagnosed at the beginning of December. Thank goodness the Kidney blood tests have been ok though we still leak blood and protein. She is so miserable with the constant pains wheather its joint or abdominal or chest or wherever else it occurs at any given moment; its heart breaking to watch the fatigue and how it impacts her life. We are up at RVH childrens tomorrow for our first consultation with the consultant. Im scared incase we're missing something, or that it just wont go away, its horrible not to be able to take their pain away. We just seem to be running to the Gp every week , theyve been great but can only assess her to make sure nothing sinister is happening. It is so frustrating!!
Hi Laura
The team up in RVH are lovely - it's usually Dr O'Connor we see and she's an excellent doctor. My lad seems to have taken a fresh return of the HSP this week, and the last one never quite left. His urine is showing 3+ of blood and protein but I've not taken him to hospital as we're in RVH on Thursday and they'll do all the bloods etc then. I'd said this started in December 2012, but it was actually 2011 and the rash comes and goes a lot with him, although thankfully the pain in the joints has never been too bad since the first time. He does get tired and cold a lot. It seems to be every time he gets a sore throat that it happens with him. Fingers crossed your daughter's will clear up a bit quicker and more permanently. They'll probably just check every few months to make sure nothing sinister is happening in the background. As you say it's sooo frustrating cause there's absolutely nothing to be done but watch. Take care. Mary xx
ps Laura - should have said - get to RVH early, the parking's a nightmare!!
Hi Mary
Glad we went early, already queued for parking when we arrived. Doctor was happy that nothing else was going on, she's run all the tests you'd expect. We're lucky in that the kidney tests have been ok to date but I'm to dip stick the urine daily. She was quite hard on us about the fatigue and we should be pushing through it more. Easy said but very hard when your looking at a kid in pain and exhausted. I didn't expect a magic pill today and I know the doctor was right about the fatigue and pains but kinda felt that she didn't think we had been trying to get her to school etc. typical though she was seeing her after the rest she had with half term. I hope all goes well tomorrow with the renal consultant.
Laura
Hello there,
I came across your thread and as someone who has had HSP I would like to tell my story and offer reassurance. When 9 years ago when I was 11 I contracted this disease, I was otherwise fit and healthy but one day I became unwell with flu like symptoms then very aggressive non-stop vomiting and horrendous stomach pain. I was admitted to hospital where overnight the rash developed. Just like your son It was suspected I had meningitis until one doctor realised what it actually was as she'd seen it before but no-one really knew anything about it. I was hospitalised with this disease for months as it never went away or cleared up it was just constant with always high levels of protein and blood in the urine but luckily I had no kidney damage. I remember feeling so run down and frustrated, not being able to go to school and feeling like a freak with the awful rash and feeling like It would never go away. I was put on antibiotics which despite them saying medication doesn't help it did. Eventually about a year later I saw a new doctor who had seen some cases of this before, I was sent for a kidney ultrasound and it was discovered that the HSP was being caused by a certain strep virus that was living in my tonsils. They removed my tonsils and shortly after my rash and everything went away and I haven't had it since. I'm now twenty and living a full and normal life. I just would like to re-iterate that even though this disease is so horrendous and does seem like it will never end, there is one. I don't know if my situation could help that of your son's but the fact it always occurs for him after a throat infection rang true with my own.
All the best to you both,
Zoe. xx
Hi, I'm a Chinese mom. my son who is nearly five was diagnosed with HSP this January and he has all the symptoms like rashes, joints pain. He also has protein and blood in his urine. He was off school for 6 weeks and we sent him back to school last week because we all felt that he was much better, however he picked up a cold and his condition gets bit worse. He has blood test everyday since last Wednesday and doctor refers him to great ormond street hospital in London on this Wednesday. As we all understand there is no effective treatment for HSP, so I start to give him some herbal medicine. I'm not sure it will help definitely or not but I think at least they are very natural and has not much side effect. I also consulted a few doctors in china and asked advice, they told me they use combination of herbal remedies and steroids ( only whet the renal function is seriously damaged) to help patients with HSP, they also said plenty rest and keep cold at bay is very very important. , taking vitamin C and calcium tablets are also very helpful. So I decided to keep my son off school for another few weeks because I really don't want to him pick another virus and HSP comes back again, I can't afford the consequences. My son is taking herbal medicine everyday now and i also give him low protein food . I'm not sure if acupuncture is helpful or not , I will find out.
Good luck with everybody with HSP, hope you all recover soon!
Dee
Hi Zoe - thanks for sharing your story. We're back in hospital again next week for a follow up as the protein count in the urine was over 100 at last check, so they're monitoring. It's very interesting to hear that your rash cleared up and left once your tonsils were removed - I've heard that once before, but now that you've reconfirmed it I'm going to mention it to our medical guys and see if they would try it. And it's fantastic to hear that you've made a full recovery! Keep well x
Hi Dee - It sounds like the doctors are on the case with your little boy. I kept my son at home at lot at the beginning too, but eventually realised I was probably doing more harm than good - if I kept him in the heat all day then he was catching the cold much easier when he eventually went out. He was happier in himself too when he was back at school as usual, and even did PE during his last attack, rash and all. My own advice would be dont let the HSP interfere with your life, try to live with it, just in case its something that you find isnt going away for a while. Fingers crossed though as your son is younger he'll outgrow it a lot quicker. Take care x
Laura - as I said above, I was the same - molly coddled him a bit too much and then finally realised I wasnt doing anyone any favours. The doctor is right - a bit of tough love because if this goes on for you as long as it has in our house you really do have to find a way to live with it. My lad only misses days now where he's really sore and the paracetamol doesnt work (just in case they didnt mention it - no nurofen due to the kidney issues). It keeps the teenagers happier too I think cause they get distracted for the pain and rash when they're with their mates. Hope the symptoms are disappearing. x
Hi Mary,
My son is 20 years old and he was just diagnosed with HSP, He has all the symtomes with severe abdominal pains,rash, etc.
Last year my son fell of a sixth floor balcony (50 feet) landing on concrete. He mirculously survived but he was in coma for two weeks. While he was treated in the ICU for a month he was pumped with lots of strong medications amongst those were strong antibiotic treatments which I'm suspecting ruined his bacteria balance.
I think antibiotics are killing all the good bacterias in the intestins and therefor making the children treated with antibiotics reseptive of imune disorders like this one. I would suggest you take your son to a reputal nutritionist who can help you understand what he should/should'nt eat in order to bring the healthy bacteria level back up.
I just made an appointment for my son today with a very reptual nutritionist, I have my hopes up this will help. I wish you and your son all the best, I would love to hear about your success.
Brigitte
Hi Mary
My daughter Rebecca who is 12 has had HSP for 10 weeks now and her urine levels are increasing each week it seems. She is currently sitting at 2 plus protein even though this was 3 plus at the hospital this afternoon and 3 plus for blood. The rash is still coming in continual waves. I was just wondering how your son is now and if things can get better in time. Really need to hear there can be light at the end of this very long dark tunnel.
Hi Kelly. Sorry to hear about Rebecca. Eoin was constantly getting the rash and had high protein in his urine for about 6 months before they decided to give him a kidney biopsy which showed there was no serious damage (thank God!) to his kidneys. There was slight perforation I believe, which causes the kidneys to leak protein into his urine and this has left him that he is usually ++ protein in his urine at any time. He took a number of waves of the HSP, usually just after he took a throat infection, He gets cold quite easily and his energy levels never went back up to what they used to be, sports wise, but while that was initially down to the HSP, I think he was out of the game so long he lost interest/confidence. The last time I posted was 4 months ago, and dare I say it, he has been well since. He still sees the Head of the Renal Department in the Royal Victoria, and our local Paediatric Department keep an eye on him, but the rash has not been back since and he is as well as he has been since taking this. So a year and a half down the line, and I'm quietly hopeful that he's finally getting some reprieve from all this. On my last visit to the doctor I was told that if he got the rash again just to do a dip test and as long as his blood isnt high we dont even need to go to the doctors 
So yes, there's light at the end of the tunnel and hopefully the kids will both make a full recovery! Hope this helps. Message me any time x
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 ?
Hi Betsy
Can you tell me what Dapsone is please? My 15 year old daughter has HSP, diagnosed in May of this year and it just won't go away. To say she is fed-up is putting it mildly. Look forward to your reply. xx
Hi Laura
My 15 year old was diagnosed in the middle of May, and you're so right when you say tht it's heart breaking to watch the fatigue and how it impacts their lives. I feel we're getting excellent treatment here in germany with a lovely Specialist, but she gets so very tired. At least now we've got the summer school holidays, so I'm hoping that by the time the kids go back to school, she'll be able to join her classmates, as she spent the last two months out of school It's hard to stay positive for her. I've also got a very, very troublesome 13 year old son to add insult to injury, he's not helping either. Anyway, I don't want to moan but it's quite difficult to stay positive isn't it? Anyway, glad I found this thread and know that we're not all alone with this.
Take care, xx
Hey there,
I can completely understand how your daughter is feeling! I literally went through a stage where I didn't want to go out because I was scared of my legs getting worse so I can definitely sympathise.
I was referred to a dermatologist who gave me a drug to try called dapsone, it's an immune suppressant so it stops your immune system from being so hyperactive and causing the rash. They say hsp is an auto immune disorder so this medication has really worked for me, I only take half a pill every other day but it was a massive relieve to finally have the rash gone! I really hope this helps.