henoch schonleich pupura, HSP

[quiteknackered]

Just hoping there might be someone out there willing to share and support about childhood experience of henoch schonleich pupura.

Could do with some words of wisdom.

anyone?

The more I read on HSP the more serious I realise it is.Anyone with experience out there?

My brother had it aged 8 (he is 36 now) and was very poorly. Hospitilised for about a month. I am sorry but it was so long ago that is all I can remember.

Is it you who has it or one of your children?

It was very rare when my db had it and I only know one other person who has had it.

Thanks Lamb!
So good to hear from someone.
My dd, aged 6 has it .
It's fairly rare, 1 in 5,000 I think.
Glad your brother was ok.
Kidney damage is the worry and it's not treatable.
Also seems that it is hard to tell at the initial stage what the long term kidney sitauation will be.
Did your bro have kidney problems?
x

debbiewebweb, I hope you some how see this thread!
I've been trying to trace how your dd is doing.

Sorry to hear that your dd has it. Is she in hospital? I am pleased to report that my db has no kidney damage and I wish you well and your dd a speedy recovery.

thanks,really nice to hear your brother ok

Hi quiteknackered,
I have seen HSP through my job,most times children make a full recovery,its just a bit slow an tedious for them.Even with haematuria(blood in the urine) they tend to have no long term problems. Hope your daughter makes a speedy recovery.

thanks lem.

spots started day before yesterday and was vomitting for a week before that and headaches.

just don't know if what to expect. she hasn't been sick for a few days and joints seem to be settling but i believe the symtoms can just wax and wane.

how do i know if she's on the mend? How much rest does she need?

She's wanting to be active and eat a lot.

x

blood test on first day of spots was normal for kidney function but I beleive that would be the case even if she were to develope kidney problems.

Hi.
My DD had it when she was 4 (now 11).
Began with aching joints, then spots which looked like chicken pox, but they then became purple and didn't blanch.
this was just before Christmas and we were sent to the hospital for numerous tests. They then referred her to GOSH over the holiday period and did lumbar puncture and began steroids intravenously for 48 hours, then by tablet for about 6 months as she had developed damage in about 8% of both kidneys. They stopped further damage but can't repair what's done.
She is under annual review (until an adult) but can honestly say that to all intents and purposes she has made a complete recovery and within a few months of contracting it, has led a completely normal life with no obvious after-effects.

Clam
THanks for that.
I'm just working out that the fact that she is feeling better, apart from rash now, and that blood test ok, does not mean she is clear of kidney problems yet. I beleive kidney probs are the last symptom to show.
Not sure if she should be resting or just her usual manic self.
So glad your dd is ok now.

I'm just struggling with the fact that we don't know if the syntoms are on the way out or will reappear and how to assess how seriously ill she is. As kidney damage is the serious complication and is silent and may not start for next 3 months or so.

AAghhh

also is very hard to talk to people about because its far from straight forward.

and i get the feeling doctors aren't too interested as they can't do much and it is mostly self limiting. so they don't waste their time on it.

that's how it felt when we were sent home from hospital on friday afternoon with precious little info and no plans for folllow up.

My dd2 was suspected with this last year, non blanching rash. She looked so poorly, really rashy and swollen in the end, esp her face. it turned out not to be HSP, they said it was MAYBE a reaction to a virus, but they gave us all the details of HSP and then were very good with follow ups ie urine tests to check for blood, just in case they had been wrong.
Hoping all concerned are recovering well.

But at least you know to be on the lookout for kidney complications. There was a young teenager in GOSH at the same time as us, who'd suffered major kidney failure and was looking at dialysis and possible transplants. She'd been weedy and lethargic and ache-y for ages, but they'd put it down to teenage hormones. By the time they found it wasn't, it was too late. At least with HSP there are visible symptoms to watch out for.
And my DD's renal deterioration was pretty quick. Protein in urine and blood, which meant the kidneys were leaking through the scars (that showed as the rash externally). So if your DD's bloods are OK, then surely that is good news?

We also had to have a GFR, which is a procedure where they run blue dye through to see how efficient they are. We had one pretty much at the time, then 5 years after. All fine.

Oh and they were also very hot on blood pressure. The automatic machines at our local hospital weren't accurate enough (and freaked the life out of D when the cuff nearly squeezed her arm off!) so GOSH relied on the old-fashioned pump ones.

The docs said that the whole thing was her auto-immune system's violent reaction to a virus. Dunno if it's relevant that she'd had her MMR booster a week or two before. The docs said not, but then they would say that.

THanks Clam and Nanny

Yes, her blood was normal for kidney function. But that was on the day 1 of the rash , after 8 days of sickness. From what I can tell kidney problems are the last symptom to develope. Was that the case for you?

I do wish the hospital had been more informative as I feel that I'm left piecing things together myself.

Do you remember what you told school?

I know a little boy (3yo) who has just had this. As far as I know he was out of hospital within a week, but is still pretty miserable and suffering joint pain (about 2 weeks later). There's a high recurrence rate - about 30% get it again within 3-6 months I think, so you have to watch out for that.
I think the vast, vast majority recover fully.

Well, the rash appeared on a Saturday, went to docs on Monday, local hosp Monday evening by which time the levels were all up.
She was just in Nursery at the time, so mornings only, which she coped with just about, although she was shattered by the afternoon. GOSH business was during the Xmas holidays, so school irrelevant. Began reception in January, and was fine, although I kept them informed (but taught at same school so easy). Monitored her diet for a while - low salt etc.. plenty of fluids. Twice-weekly visits to the local children's ward to check BP and urine, and regular trips to GOSH for bloods. Began weaning her off the steroids after a couple of months. Her face ballooned a little bit, but otherwise fine.

Oh, and rash took weeks to completely disappear.
I believe it can recur, but it never did for us. I just make sure that we go straight to GP if she has any think that might resemble a urine infection, as you probably would anyway.

Thanks clam.
Will let you know it goes tomorrow at hospital. Hope they arrange proper follow up.
Really helpfully to tear your dd's story and glad she's doing so we now.
X

Did you try to get your dd to rest or just let her be active if she felt well enough ?

Hi, I had this in my teens. think i was 16/17. I was at the very upper age limit so was apparently even more rare. My rash was mostly contained on my legs and I had it diagnosed on my first visit to the doctor due to the rash, sickness and aches. I had been vomiting for a few days before and after the rash i had to get a taxi to the doctors with 2 friends to support me. I somehow managed to run from 1 end of the surgery to the other to avoid vomiting in the waiting area. I was really groggy for months some days feeling rather active and got on with thing as usual when i did. I came down with every cold or bug going. Doctors dont know why i ended up getting it but i have had no long lasting effects from it at all