Anyone have a child with HSP?

[Tarabelle]

My 11-year old daughter was diagnosed with this out of the blue last weekend when she suddenly developed a scary non blanching rash on her legs and arms. She had a really bad headache and sore throat too. Tests showed she had blood and protein in her urine, but thankfully the blood tests showed her kidney function is fine so far. She has one sore knee, not swollen, and has been incredibly tired all week. All the medics reassure me this should be a 4-6 week affair with possible recurrences, and that long term kidney issues are really unlikely - though they will monitor her for 6 months. It’s hard to get proper information.... there are HSP Facebook groups but they are really alarming to read, seemingly full of those who have experienced the worst-cases scenarios! Anyone here with any experience to share?

Bump

Hi,

My youngest son had this 2 years ago and it was really scary at the time. I know exactly what you mean about the FB groups.
We had a couple of months where his rash would flare up and he'd be unable to walk. He had bad swellings and rashes on his legs, arms and even on his penis, which really upset him (and then amused him - strange boy).
It was very concerning, he was so limited in what he could manage and had a lot of time off school.
However he improved, we monitored his urine at home and were then signed off by the hospital 6 months later.
He's happy and healthy now, with no lasting effects. This is the most common outcome, but we don't tend to be the ones posting online so you'll get a very skewed view if you spend too much time reading support groups.
I hope your daughter improves quickly and stays healthy.

Thanks for the reply! It’s really good to read a positive account, too much scary stuff online. Great to hear your son is OK. I have also had conflicting info from doctors, some of whom seem very misinformed or just inexperienced... it’s all a bit confusing and worrying. Guess I should stay away from the so-called “support” groups!

Any other HSP sufferers out there?

Bumping this again!

One of mine had it years ago. No problems at all- the hardest part was obtaining and delivering the sample every day!
His was buttocks and legs. He wasn't even ill, to speak of.

My ds had it starting in 2017 at 7 yrs old. He was really unwell for a week when he was off school. He had a rash on the lower half of his body and terrible stomach and joint pain in his knee. As long as he had calpol he was OK and went back to school after that with no flare ups. We have only just this summer been discharged from the hsp protocol by the children's hospital. Even though he was feeling well with no loss of kidney function his tests kept coming back with trace amounts of protein in the urine. The doctors were not worried about it, they were just being safe.
My friend's brother got it as a young adult (very rare) and has yearly kidney function tests in his 40s. He's fine though.
I hope your DD feels better soon OP.

Thanks for the replies. It’s really good to hear from people who’ve been through this as no-one seems to have heard of it! I think the long-term kidney-function testing seems most worrying... hate the thought of having this at the back of our minds for months.

It is rare- the walk in centre had never seen it, called in other members of staff to see if they had, didn't know what it was, sent us to GP. The GP called in other drs, and they mumbled together before agreeing it was HSP- and only because they'd seen one case before. I think we were lucky. It was all managed at the GP. As the ongoing urine tests were clear, we didn't need any further follow up.

We went to A&E because my daughter had a pounding headache and rash all the way up both arms and legs. Even there we heard different things. One told us HSP is ‘really common’, which seemed odd given some of the nurses and younger docs wanted to see the rash once it had been diagnosed!

I'd guess hospitals see it more often than local services, just because of numbers. We struck lucky with a GP that recognised it, and I only went to walk in centre because he wasn't 'ill' and we drive past it on the way to school.

I'd asked a neurologist friend if he knew what it was, but he didn't twig.

It's an oddity, that's for sure. Not common, if most GPs haven't seen it.

Mind you, the child that had it was a foster child, and sometimes pain signals aren't properly processed. He'd panic over tiny injuries and not notice major ones. Perhaps he was in pain, but hadn't realised.

He certainly didn't have any lasting effects though, and barely any time off school, a day or two.

I think different kids have differing symptoms and at different stages! As far as I can see the rash can be the sole symptom, or the joint pain and kidney stuff might accompany it or follow weeks later in flare ups. My daughter had a much smaller rash on her legs weeks ago with no pain at all. I had no idea it was anything to worry about, just thought it was a random allergic response to washing powder or something. Ho hum!
And as for docs occasionally pretending to know more than they do, I’ll never forget a GP friend telling me that when she briefly returned to A&E after years away, she was so out of practice that she used to go and google stuff rather than ask younger, less experienced colleagues for help!

Hi Tarabelle. So my 9 year old is going through hell with this at the moment. We were diagnosed mid December after a trip to a&e with pain in hands swelling & the rash. A&e initially treated him for sepsis until hsp was diagnosed. He had a rough few weeks over the Xmas period. Swelling, joint pain, vomiting then slowly started gaining energy & went back to school. We were told to dip his wee & have weekly bp & urine tests. Over the last few weeks blood & urine were detected in his wee. And for the last 2 weeks his wee is red like squash. It’s really alarming. After being seen numerous time’s at my local hospital he has now been referred to the renal specialists at Bristol children’s hospital. With suspected kidney damage. Though he is well in himself now the urine is not good & he still gets puffiness. He is booked in for a biopsy on Thursday to see the extent of the damage & being honest I’m pissed off it’s taken this long for them to act. Sorry not what you wanted to hear but just thought I’d share my story as we are going through the worst case scenario bit now :(

Sorry to hear that Ali, that sounds really tough. Poor you and your poor son, you must be really worried. But now that he's seeing a proper renal specialist, I hope he'll get the right treatment. I've read many positive stories (amongst all the scary stuff!) of kids having this really badly and coming out fine the other end, but it does seem to be a drawn-out thing. It's just the unpredictability of it that is so alarming. My daughter still has blood detected in her urine at her weekly hospital tests, so it's really stressful waiting to see if it gets better on its own. It's also weird how she she seems completely well otherwise - people just assume she's fine because she's back at school and her rash has subsided. I do hope her doctors know what they're doing, there seems to be a different one on duty each week and they aren't always HSP-savvy (as far as I can tell)!
Anyway, I hope the biopsy goes really well tomorrow and there is no significant damage. Fingers crossed for you and your son, and do keep us posted.

Thanks for replying. It is so stressful even though my son is not fazed at all lol. I shall let you know how it all goes x

Hi Ali, just wondering how the biopsy went last week? I hope it was all OK and you’re OK too. Let me know if you get a moment.

Hi thanks for the reply. So we’ve had an awful week! The biopsy went smoothly only for me to get a phone call the following day from the renal ward asking me to bring Aidan in to Bristol hospital ASAP. He has severe inflammation of the kidneys but thankfully no permanent scarring. He had 3 transfusion over 3 days of steroids. He is now on tablet form & expected to stay on them for 3 months. Due to the protein in wee he has bad fluid retention which has made its way around into one of his lungs & around the heart. We were inpatient for 5 days & got discharged yesterday 🙌 He’s going back for regular checks every few days at the mo. He’s on another drug to help him wee to try & shift the fluid. I hate this to turn into a horror story. He has had a rough time but is expected to make a full recovery. I just honestly can’t believe 6 weeks after diagnosis we were to end up being admitted to hospital. He has been an absolute trooper by the way

My eldest DD had this when she was 6/7. She was in hospital for 5 days, and took around 3 weeks to feel what I'd call "well" again, but she recovered really quickly.

I remember people just looking blankly at me when I said what she had. Doctors initially treated for meningitis due to the rash.

I was diagnosed with HSP 3.5 years ago, although technically it took over a year to put a name to it. Mine has never disappeared, they just keep my immune system suppressed all the time with steroids which have been replaced by azathioprine in the last year or so. Quarterly blood tests check my kidneys are good and still show high inflammatory markers but quite honestly, the renal consultants don’t seem concerned about ‘fixing me’ and just tell me to keep in taking the pills. The rash is mostly gone but I itch everywhere all the time, get painful joints and have practically zero circulation in my legs. I guess if one of those things that if you get it as a child, it’s not too bad and you get over it, but as an adult.........(I’m very late thirties!)

Wow Ali, that sounds really traumatic. Poor you and your poor son - but he does sound like a real trooper! What a shock for you as you say - must have been just horrendous to get that hospital call. That's great news anyway there is no scarring - fingers crossed for a complete recovery. I really hope he continues to feel better.
My daughter fell ill with yet another really nasty cold last weekend - 3 in the last month. Hard to know if it's HSP-related but she just seems really under the weather and very tired. Lo and behold her rash appeared again 2 days ago - aaaaargh! We are off to get the urine checked again tomorrow and if there is still blood I was told we might see the renal team. I just want her to be well again, it's all so uncertain how it will play out.
Know what you mean about those blank looks LisBeth - no-one has a clue and when they look it up online, the websites all say it's a 'mild' illness that is usually short-lived. So it's hard to explain to people just how unpredictable or potentially nasty it can be.
Pineapple, did you get horrid side effects with the steroids? I do worry about those as a possible treatment the longer this goes on. Your itch sounds tough to bear, what hard luck to get this as an adult.

The steroids weren't that bad other than made it impossible to lose weight, made me really hungry and made my skin thinner, everything seems to rub and make my skin sore. Sadly with auto immune conditions it's just luck of the draw and they can happen to anyone. I'm sure your daughter will be absolutely fine, children always seem to bounce back better than grownups, and my scars took a while to fade but they did. No idea if it helped but I did regularly douse myself in bio oil as my rash went from my toes to my thighs and my hands to my shoulders!

That rash sounds awful, it really does seem horrible for adults to get this condition. Thanks for getting back to me, it’s been so useful (and a real eye-opener) hearing of other people’s experiences. Did you ever try dietary changes? You hear of people cutting out gluten and sugar but it’s difficult to know what would help. My daughter still had blood and now some protein in her urine today but blood tests were fine thankfully. The uncertainty goes on!

Hi all, are your children all well and through the worst of it now ? I do hope so.

DS was just diagnosed with HSP on Friday, he is 6 and being so brave but struggling/upset every day. ☹️

Hi CheshireDing , sorry to hear about your son! It's a confusing illness and not always easy to get information - hope he's doing OK now. Does he have any kidney issues?
My daughter has recovered from the nasty rash but still gets outbreaks of a pinprick rash 3 months on (she first had the main rash in late Nov, though not diagnosed till Jan), and she continues to have blood and protein in her urine. Her joints are sore most days but never agony – just an annoying background thing. Could really do without this Corona virus worry on top of it all - but looks like most kids don't get that too badly at least.
Not sure of how this will pan out but really hoping it tails off soon. The kidney issues are the most worrying aspect.
Hope your son has a quick episode that causes no long-term issues!