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.

Thanks for the posts.
Urine ok today, blood test result tomorrow.
Hospital didn't suggest folllow up until I said I thought weekly urine tests were needed for a few months .

my son had this, although not to the same extent as i've heard on here. only had the rash, was advised to dipstick his urine daily and blood pressure checked weekly for 8 weeks. hope your child is ok.

Hi, I had it when I was small - 2yo, iirc and it went for about 6 months. So I can't tell you much. It was a long time ago and in the US so things might've changed. (Have read other posts now and things have definitely changed!!) I can remember having my foot so swollen I was wearing mum's sock and couldn't get my shoes on - trying was excruciating - and I had to have a LOT of blood tests (made me needle phobic later). Kidney damage was the concern but afaik I didn't have any, certainly all ok since.

There is one lasting effect that's quite a good one - the body makes a particular immunoglobulin (IG-a? can't remember) in response, which makes for a very good (whole) blood donor in the future. (Should your dd choose to do that when she's older, I mean.) I always thought it was kind of a nice outcome, all things considered.

Hi, I had this when I was 6. I remember being ill for what seemed like weeks, getting very weak (not being able to walk) and having bad abdominal pain. I was eventually hospitalised although my Mum maintains that this was only because the GP felt sorry for her having to look after me (make of that what you will).

Not pleasant at the time and I think it was very scary for my parents as it took the doctors ages to diagnose it but it's certainly not done me any lasting damage.

Hi, my dd (4) has just been diagnosed with this too. She had a terrible dose of chicken pox 5 weeks ago and they think this has triggered the HSP. Our stories are similar, rash appeared on Sun night (no sleep for me), doc on Mon sent straight to hospital and blood tests etc all clear. Luckily for us GP recognised it straight away. We went to gp's yest checked her urine and blood pressure and then back to GP's again on Friday to test again.

Unfortunately she has an eye infection too and managed to pick up a vomiting bug from the hospital (well that's what GP thinks)!!!

She is exhausted so I am keeping her off nursery. I think her immune system is v low too. Slightly diff for us because no school yet but all the docs seem to think it's fine to carry on as normal. There's no way DD could and I am keeping her home to try and recover a bit.

Sorry for huge post but I felt a bit of comfort reading your post. It's quite isolating isn't it, when you don't know much about it and no-one else does.

Hi Shannie!
Good to hear you. I will look out for your posts to hear how your DD is.
Hope she's ok. Bless em.

Hi, had DD at GP yest and urine clear and blood pressure fine so all looking good here. Back twice next week for more checks. She is so much bette but still has tiredness slumps. How are you and DD doing ?

Also thought this article was great www.bbc.co.uk/health/conditions/henochschonleinpurpura1.shtml

trace protein in urine when saw GP on friday, they said just to test urine weekly. Infact the hospital didn't suggest any follow up at all . blood pressure fine. My DD seems like she's on the reocvery although still complains of headache and stomache ache. Not sure if that matters much.

Nice to find you and glad your DD doing well too.
I just hope that DD gets proper follow up.

Hi shannie, is all your follow up via gp rather than hospital? I got given dip sticks to do myself but no real explaination of what to look for.

Hi typing one handed DD lying on me watching tv! We are at GP's twice this week, not sure what will happen after. Luckily my GP has seen HSP before so seems to know what she's doing. Why don't you phone your GP and make an apt, how can you check DD if you don't know what to look for ? My DD is still not well, eye infection is awful and seems a bit flu like. What about your DD and how are you ?

I had HSP when I was about 10/11. I had a throat infection which was treated with penicillin - either thing could have triggered it apparently.

I was very weak, very sore joints, could not walk, threw up a lot, had excruciating headaches and the characteristic rash. I had about a month off school, basically lying in bed. I was at home - there was never a question of hospital or even hospital appointments, in fact I am a bit alarmed to see about the possible kidney damage as I'm sure we were never told this at the time, or about the possibility of recurrence. I had bloods taken a couple of times while I was ill, but no follow up testing or urine tests.

I had no steroids or any other treatment that I remember, the GP told me to drink a lot of weak squash - which I just threw up! I felt pretty washed out for weeks afterwards and in photos of the time I look very pale and thin.

It is very interesting what phdlife says about the antibody Iga. When I was pregnant, they got quite excited about some blood tests and the midwife told me there was something weird (!) about my blood but couldn't be more specific, I wonder if this was it?

Jules, sorry for delay. I would have thought that you'd know by now as urine is tested so much in pregnancy. Also, co-occurrences are milder. But maybe ask your GP to put it to rest.

HELP!

The hospital did not recommend any follow up at all. I had to get them to double check and then they agreed I should see the GP and get dip sticks for a weekly home urine test. They were most unconcerned and haven't bothered to write to my GP with confirmation or to give proper instructions on follow up.

She has protein in her urine and I have no idea how to track this or just to know what to expect.

I'm starting to panic a bit kidney damage as she obviously having kidney involvement. The hospital have really told us nothing and the GP doesn't know much about it.

I've asked for a private Paed appointment but that is not until mid April and I don't know what should be tracked till then.

Any one out there?

She's feeling sick tonight and I'm feeling so worried in case we're back to the vomiting. It's so much harder than dealing with gastric sickness as it's worrying.

Ok, I'll say it. I am tired now and worrying and no one else seems to have a clue about it.

anybody?

Jules- meant to say re occurrence

Hi I'm here. My DD has protein in her urine as well and they don't seem to be worried. GP said the first 2 weeks is the crucial bit. Blood pressure being normal and no blood in urine is what they are looking for. (I am not expert but just passing on what I have been told). Did you see the BBC link I posted, could you show that to the GP ?

Anyway my DD is still ill. She has now had 2 eye infections, vomit bug, and a respitory thingy all in 2 weeks. GP said it's not symptoms of the HSP but because her immune system is so low. Could your DD have a bug because she is low ? I don't know if I am helping at all.

Oh Shannie, So good to hear you

I'm sorry that your DD is not well. Yes,I think it's the same with my DD too. There is a sick bug going round and she looks awful.

I really appreciate talking to you as I feel so in the dark about it. I tend to like to know everything health wise as I'm a bit medical job wise.

My DD hasn't got blood in urine.

How are you tracking your urine tests? do you do it at home? How often?

My dad had terminal cancer just 6 months ago and husband not well and so I think I'm a tad shell shocked too... and annoyed at the hospital for not making things any easier.

Yes, read the BBC link. Thanks.

You poor thing, you have been going through it, sorry about your dad and dh.

My DD has been at GP's twice a week for blood pressure and she is monitoring the urine for blood. She said to me that the first two weeks are the important ones.

We have been lucky that our GP has seen HSP before. The hospital have said they are happy with GP to look after her.

Our main thing now is that she catching everything going. I am now keeping her out of nursery until after Easter (she's 4).

I am only repeating what I've been told but seems to be a bit more than you've been told. It's so hard telling people because no-one has heard of it.

At least we have one another and all the others that have replied to your thread.

Take care

I'm going to get some sleep now as I have a hunch DD will be up tonight.

Feel a lot better for hearing you out there Shannie!
Hope your DD sleeps ok.

good idea pet. Last night was the first night DD slept through in a fortnight, so unlike her. Hope your DD is ok.

Hi Shannie,

I know this is a bit over the top but I've asked for a referral to private kidney specialist. Purely so that we can get a clear follow up plan.

I realise it's not necessary and that follow up should be within the scope of the general paediatrician but I'm afraid they completely stressed me out by seeming to have no inkling of the need for monitoring.

I don't really know what I'm looking for on the dip sticks or how to track and when to test. Even how to record the info. I've tried asking but have the GP is supportive but no experience with HSP and the hospital haven't even written to him to confirm diagnosis or give blood test results let alone give management advice.

Your GP sounds clued up luckily and sounds like you are being monitored professionally.

Anyway, I will of course share all the information I get in case there's anything new.

DD having lots of abdo pain and headaches.

Looking forward to Easter hols and not having the school rush.

Hope you and your DD ok.