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.

[shannie]

Hi we ended back in hospital with DD on Monday night, she got a new rash, worse than first one. They said that it can happen with HSP, checked blood pressure and urine all fine. What a rollercoaster!!!

They did say if she has had abdo pain to get in touch with the hospital (again no expert just repeating what they said). Hope you are ok and DD gets better soon.

[quiteknackered]

How is she now? We went to nephrologist yesterday. He said severity of rash is no indication of kidney involvement. But feels worrying.
Dd not bad now he checked urine and said no protein , altho gp had said that the protein was rising!
He knows his stuff I reckon, so I'm feeling reassured .
Is stressfull. Hope you all ok

[bubbalootie]

Hi guys, I am so glad I have found you. dd is 5 and was diagnosed with HSP 2 weeks ago. At that stage she had the rash on her legs and her knees and feet became very swollen so she couldn't walk.
Our local children's ward were great, one nurse said they get 3 or 4 kids with 'the Henoch's' (!!!!) every year. They are seeing dd weekly to get her obs and told me to go to the GP for a blood pressure check in between. This was more of a challenge than I thought as GP does not have a paediatric cuff so nurse said she was unable to do at and eventually dragged a doctor in to do it with an adult cuff. When I went back to the hospital and told them that GP did not have paed cuff the registrar looked at me like I had landed from Mars and said that I should tell them to get one as they were going to see a lot of dd! hmmmm not sure how to handle that one.....
Protein in urine seems to be increasing and a trace of blood last night but going to hospital today for her check up so trying not to get too wound up.
Dd has had tonsilitis on and off for a year (tonsils very large all the time) I have been to GP at least once a month about this but he usually said 'big but not infected' although she has had 5 courses of antibiotics.... Anyway she was finally referred (by a different GP) and the ENT consultant took one look and said they were far too big and thought they should come out. This happened 2 days before she was admitted with HSP; once she was in one look in her mouth and the consultant asked why her tonsils had not been removed I said she was on the list for April 30th so he put her on a week of antibiotics to try and bring them down a bit.
I am trying to be positive but finding it all a bit of a worry. I am glad she is being monitored and glad to find some other people out there who know what I'm on about! Thanks for listening guys

[bubbalootie]

PS meant to say love to you and your dds. Hope they are soon feeling better xxxx

[shannie]

Hi bubbalootie, what a worry for you. We have just finished at GP weekly and back in a month. DD is getting better and stronger day by day but is still not back to herself.

Your DD (and you) sound like you have been through it. Tricky if the GP won't get the cuff can you go back to the one that finally referred her for her tonsil's and ask her ? Our surgery has 1 (for the whole surgery) and it is quite a big surgery.

Hope you got on ok today at hospital.

Quiteknackered - That's great you got her seen by the nephrologist, do you feel a bit better now ?

We nearly collapsed when DD got a second rash, seems to be unusual but hasn't seemed to change anything.

Thinking of you and DD's. Hopefully we'll get better weather soon and that will help

[dpwellies]

Hi everyone, hello quiteknackered hope you coping ok right now. My dd had HSP a few weeks after her 5th birthday, it was really horrible and I do feel for you. DD is now 8 and still see's her paed consultant every 6 months to check her ongoing low level protein and blood in urine. She was very poorly at the time and after a few weeks of HSP ended up unable to walk, in a great deal of pain unable to hold down any food and spent a week in hospital. She recovered after a few months even though the rash returned once or twice and she's been pretty healthy since despite this ongoing problem. She has however suffered with extensive scarring from the open sores. Hope your dd is on the mend.

[dpwellies]

Hi, a bit of a bump to ask how you and your dc's doing - hope they're getting better.

[quiteknackered]

Hi there, been away so sorry for delay.

How are you all doing? Hope DC are ok at the moment.

DD had another vomtting episode over Easter. Did shake me up a bit. But am feeling more reassured now having finally spoken to a doc who knows HSP.

Anyone else find home urine dipping tricky? I can hardly see the difference between neg and trace. so havent been 100 % about my home readings.

DD complains of abdo pain alot still, doc didnt think this was related tho.

have noticed some school friends seem to think i have made the illness up!
Wellies, thanks for checking in.
MN has kept me sane with this odd HSP thingy.

Thanks.
x

[ChocDigestive]

Hi there,

my 6 year old son was diagnosed with HSP in August last year - and we have been having monthly reocurrances since.

He was initially admitted to hospital and put on a drip as he was so weak. He then had steriod treatment for 2 weeks.

The rash occurs every time he is ill - cough, cold, run down etc. Usually its just fairly minor and we just ignore it. However, he has had a few major flare ups and has been back in hospital.

His last flare up was 2 weeks ago and since then he has shown +++ blood in his urine (we do the dipsticks at home) and + protein - we will have to take him back to hospital on weds if it doesnt drop.

It is hard to explain the condition to people and alot of the time they try and tell you that he's allergic to something - I'm often asked if I've changed my washing powder recently!! LOL

He is due to see a specialist on 26th april as apparently its quite rare for it to come back so frequently and so much. I'm hoping he will have some answers.

Its very difficult as I know there isnt anything anyone can do for him but its heartbreaking to see him that way - especially when other children comment on his rash

[mackerel]

my son had this and had terribly painful joints, couldn't walk, the full rash adn it particularly affected his genitals - made them swell etc. V. unpleasant. we had to see the GP frequently for tests and the hospitals too and we had urine test strips to check every day. Have to say he was quite unwell and the rash was scary as hell but he made a full recovery and has not had a repeat - 5 years now.

[shannie]

I can't believe how many people have experience of this too. My DD seems to be on the road to recovery. Hope to get her back to nursery week after next. Seems healthy enough just tiring quickly. Finding this thread comforting, so thanks

[dpwellies]

I agree it is difficult for others to understand. My dd was very poorly but another child I knew at pre school had it 2 years after dd and he missed 2 days off ill and was then quite well so those who don't know me or dd well may well think it was exaggerated.
I'm worried dd is having another flare up again, she's complaining of sore knees and ankles and her thumbs are red and sore . I'm just hoping and praying its just a little hiccup as her urine seems good at the moment and it has been 3 years so was hoping it was finally behind us.

[bubbalootie]

Thanks shannie for your support and hi to all the fab people on this thread. Hospital now say they are not too worried about dd although still trace of blood and protein in her wee. She gets her tonsils out on the 30 th so hopefully that is going to help in the long term. It is hard just to watch and wait to see what happens. Sending love to all of you, it is wonderful to be in touch with people who understand. Thanks for being there. Xxx

[quiteknackered]

Hi choc digestive and Mackeral! Hope you all ok. Hope your son id ok Choc.
Keep us posted.
lots love!

[shannie]

Hi all,

bubbalootie hope your DD got on ok, it was today she was getting her tonsils out wasn't it ?

Chocdigestive -how did you get on, did you have the apt on the 26th. My DD had a re-occurence and they said one was unusual never mind more.

dpwellies - how is your DD hope it was just a blip and she is ok now. 3 years on is a terrifying thought.

mackerel- that sounds awful for your DS. Great to hear full recovery though, I am holding on to that.

Quiteknackered - how are things going now. Is DD still complaining about abdo pains ?

We are still doing well. DD is back at nursery managed 3 morning this week but is exhausted. Been back to GP and blood pressure fine and urine clear.

Hope I haven't missed anyone. Love to all and thanks to QK for starting this thread it has helped me especially when people look at me as if I'm mad

[greenmummy]

Hi there,

my son has HSP. I have created a website to help others gather information.

www.hspsupport.co.uk

hope its of some help

[quiteknackered]

Greenmummy,

Fantastic to hear of your web site. So needed. DD now seems ok. So far so good.

Will check out the web site.

Lots of best wishes to everyone who has been on this thread. Hope DC are getting better and life is getting easier for all, and you all getting the support needed.
xxx

[horsemadmom]

Sorry to be late on this one. My DD had it at 15 months as a reaction to staph impetigo. Please remember- if you know the trigger- keep your kids away from it. My DD is now 8 and has only had one reoccurrence because she knows that scabs are dangerous and her school is vigilant.

Good luck!