henoch schonlein purpura

[jane1995]

my LO was diagnosed with HSP after having a viral infection about 3 month ago, he had the purple spots which didnt dissappear with the glass test. the doctor said that rarely there can be complications involving the liver but he didn't test for this as the rash was clearing, three month later and the rash is back again so im going to the docs monday and ask if its possible to run some tests (just to be on the safe side) he is only 6 month old and was 3 when it was first spotted which im told is rare, has anyone else had any experience with HSP who would share their story?

[Contraryish]

Hi,

My daughter was diagnosed with HSP a couple of weeks ago. She's 7. She's had the rash, and her knees and ankles really swelled up over the weekend, making it really painful for her to walk. We've been testing her wee regularly and so far all clear, as are the blood tests. At the moment, her legs still look dreadful but she's dancing around as normal, the only giveaway at the moment is that she tires quickly.

I found a Facebook group which is quite useful as it's real people! You have to ask to join but they let me in quickly and seem friendly.

HTH

[jane1995]

thanks for the reply, how long has she had it for? and does the rash keep re-appearing or was it just once it showed? would it be possible for you to post a link to the facebook group

[Contraryish]

She's had it a couple of weeks and the rash has been pretty consistent over that time. Clicky link to Facebook group on my first post!

[OfflineFor40Years]

Hi, Dd had this a couple of years ago when she was 3.5 and was put on some strong steroids for a couple of weeks. I think the main complication is with the kidneys rather than the liver, but DD was lucky and hasn't appeared to suffer any long term effects.

She had urine and blood pressure tests three-monthly for a year and now has them annually. The consultant told me that she should really be monitored for the rest of her life but that this wasn't a realistic prospect.

I ordered some urine test sample sticks from Amazon and tested her sporadically in the first year, but thankfully it has been fine and she hasn't suffered any more rashes.

I can't remember too much more but if I can help answer any questions I'll try.

[goosey123]

Hi. My dd was diagnosed with this on her 5 th birthday, she had the spots and pain for about a week and made a full recovery. Touch wood, no recurrence since, but I get nervous every time she is Ill. We were told follow up for a year, 6 months on and tests are clear although she is getting a lot of infections. but that could be a coincidence.

I have to say, the Facebook group freaked me out, I think a lot of people using it have more complicated cases. But I certainly would tap info it if things weren't going as smoothly.

All the best for you, I didn't find the doctors knew that much, but paed team at hospital were good, and some clear care guidelines on patient.co.UK.

[jane1995]

my doctors didnt know about it either, I was persistent about testing his urine but he told me that he looks fine so theres probably no need, but this time im going to insist as the rash keeps re-appearing, so fingers crossed! glad your dd made a quick recovery x

[Contraryish]

Yes, I think the Facebook group by the nature of it is more severe cases, those with minimal symptoms, etc. do not need the support in the same way.

My little girl has just gone off on a Beavers sleepover, virtually skipping all the way, so fingers crossed!