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

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!!

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

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

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

Good luck with everybody with HSP, hope you all recover soon!

Dee

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

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

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.