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Any experience of HSP?

(18 Posts)
beautifulgirls Tue 17-Nov-15 22:25:47

DD is just 6yrs old. We spent last night at the hospital where they have diagnosed HSP though she is home now. Her legs are covered in the purple non fading bruise type spots and her knees and one ankle are very swollen and sore. So far kidneys are good. Would love to hear how others have done from this point. How long does the rash stay, how long will she have sore legs. Did you deal with kidney problems? We are especially concerned about potential kidney issues as she had to have short term dialysis as a toddler when she had septicaemia and was very poorly. Until now at least though they had been doing well and we hope this will continue from here.

beautifulgirls Sat 21-Nov-15 18:37:52

anyone?

Icanstillbeaballerina Thu 26-Nov-15 22:19:41

Hi - re-registered on MN so I could answer your post. My DD2 had HSP two years ago when she was 7. She wasn't that poorly when rash first appeared. Symptoms seemed to come and go for a bit. Had 3 flare ups of rash and feeling quite ill over a 2 month period. She seemed more ill with the 2nd flare up, pain moving up her body as rash did. At one point she found it difficult to walk. But should point out that DD2 has a degree of hypermobility and had joint pain previously - especially ankles. Think lower legs were swollen on and off. I also recall her being able to go to school when she still had marks on her legs from the rash - so she wasn't always ill when rash in situ. She also got bad stomach ache but no kidney issues. Although does seem prone to UTIs and more prone to night-time accidents -which she wasn't before at all. She had one night in A&E when rash appeared and then saw paediatrician for regular check ups including urine tests. Think we also had some extra appointments about the joint and stomach pain. Didn't have blood tests. Since then no problems (touch wood) apart from ankle and other joint pain seeming worse - but no evidence this linked to HSP. It's a weird illness and I found it hard to get info, there are a few Henoch Schonlein Purpura support groups on Facebook, helpful to some extent but found some stuff a bit alarming. DD2 was signed off by paediatrician about 3.5 months after first rash appeared. Seem to recall that it took DD2 a while to feel herself, she missed a fair bit of school on and off. Needed lots of rest for a while. Sorry if this rambling, rushing before battery fades. Hope your DD feels better soon - cake and flowers to her.

beautifulgirls Fri 27-Nov-15 20:41:41

Thanks Ican - glad to hear your daughter is doing well and has had no lasting effects. DD has some rash still but that has much improved and her joint pain seems to have settled though I am not sure if she wasn't quite herself this evening at bed time. Fingers crossed she was just a bit tired and no changes. She managed a full week in school this week though she didn't go outside for play or do PE so she wasn't too active overall. Kidneys so far seem ok but continued monitoring from here.

FlossieTreadlight Fri 27-Nov-15 20:59:13

I've never come across any one else who has experienced this. My DD had an episode when she was about 14 weeks old. Another a few weeks later. She's now 4. Had the rash and was moderately poorly with temp but her kidney function was fine. We're both mildly hypermobile. She is prone to UTIs.

I know this wasn't exactly what you were after, but as I said I've never come across anyone else. Really hope your DD is well soon flowers

beautifulgirls Wed 02-Dec-15 21:12:24

Thanks Flossie - Your sort of story is good to hear as it shows that there are good and reasonably quick outcomes. So far I am pleased to say DD is doing very well. She still gets achy joints but the swelling is so much better than it was and her rash is very nearly gone now. We live in the hope of no flare ups from here.

Stacie89 Fri 04-Dec-15 15:19:22

Hello there, I feel for you and your little one sad im sorry to hear of so many kiddies getting this awful awful thing, I have no experience of having a child with HSP but I myself had it as a child, from around 7 - 14. It is horrible. I used to bunk PE because of the pain in my joints and muscles and the fact i would be forced to wear shorts which was a horrifying thought with purple/red blotchy flare legs.. no doctors knew what I had. For years I just dealt with it. Then 1 doctor cracked it and with medication the flares went away and never returned. But the joint and muscle pain has plagued me my whole life. With severe effect between 18-25 the doctors still wouldn't diagnose any problem and I was told for years it was all my head which caused me to loose my marbles and become manic depressive. I am not writing this to frighten or upset you, but to inform you that it could be a hard road pain wise for your child, my mum never gave me the support, understanding or sympathy I needed as a child/teenager going through unexplained excruciating pain. I just want to spread awareness for parents that children with HSP NEED you everyday to explain, understand and sympathise their condition. All to our child.
Also it isnt all that common for the the pain to last into adulthood. Its said to usually leave with the symptoms. all the best xx

clam Sun 07-Feb-16 22:44:45

Hi - just saw this thread. How is your dd now?

Mine had HSP and the resulting kidney damage 13 years ago, when she was 4. She was admitted to GOSH for biopsies and intravenous steroid treatment, which stopped the deterioration in its tracks. The 8% damage she sustained is permanent, but I am happy to report that it has not impacted her life at all since. She still has annual reviews at GOSH - last one this coming week, where hopefully they will sign her off into adulthood.

The HSP has never recurred either, although I believe it can.

beautifulgirls Fri 19-Feb-16 22:58:04

So far so good thanks Clam - kidneys haven't seemed to have any problems though still regular monitoring and no recurrence of spots so far. Joint aches came and went for around 3-4 weeks but now settled. Fingers crossed it is behind us but I am aware there is a chance of a flare up in the future too.

Sorry to hear your daughter had HSP with kidney issues but glad that they were able to limit the damage done too. I hope it stays good for her long term.

spub Fri 19-Feb-16 23:07:40

Dd had HSP 4 years ago, aged 9. Covered in purple bruising and couldn't weight bear. Initially we were worried that it was meningitis.
She spent an overnight in hospital and was checked every few weeks over a 6 month period to ensure no lasting kidney or joint problems.
She was off school for 3 weeks and had to sit out PE and strenuous activity for a further month.
She is now an Amazonian 13 year old who is very fit, healthy and plays a lot of sport. No long term issues as far as we are aware.
Obviously, each child is different as is how they react to and recover from HSP. Just wanted to give u a reassuring message based on our experience. Hope recovery is speedy thanks meantime

dratsea Sat 20-Feb-16 10:03:50

Avoided opening up three children who, 2-3 weeks earlier, had a rash, probably HSP related. If dd has "classic" appendicitis next week do make sure they know about HSP.

Mominatrix Sat 20-Feb-16 12:56:14

DS had HSP at 8. It was not immediately diagnosed as it started on his ankle area the day after he had a particularly rough game of rugby, so was brushed aside as a rugby injury. It was evident as being HSP on the 2nd trip to A&E as the rash had spread bilaterally up to his buttocks. He had swollen ankles and knees, and used crutches for a couple weeks, and the whole thing cleared up after a month. No kidney sequelae.

messystressy Wed 24-Feb-16 20:43:50

My DD has HSP a year ago, aged 3. The hospital initially thought it was meningitis, which was extremely scary! She was poorly for about a month - rash, vomiting, swollen limbs. We were treated a bit like celebrities in the hospital, not obviously not too common. We had to check her urine every day for awhile, then weekly, then monthly. Blood pressure checks for a year, then she was signed off. She was 3 at the time. The doctors were fantastic, printing off information for us and took great care of my DD.

user1479980998 Thu 24-Nov-16 10:07:08

Hi,
my 9 year old son was diagnosed with hsp in august 2016, with a rash on his thigh and aching joints. This cleared up within a week or so, we have continued to dip his urine to check for protein and its been fine for 2 months. A few weeks ago, after a flu nasal spray vaccine, he complained of painful legs, and on Saturday developed a severe rash on his legs, bottom, feet, and severe pain in feet, and swelling in joints++. he has been is so much pain when walking my husband has to carry him around some times. New swellings keep erupting, followed by a rash. He had swelling in his right hand, side of his head and testicle yesterday. been to A and E depts. twice this week. Dr thought he may have a torsion of his testes but thankfully eventually after 4 Doctors examined him, they said it was the hsp and not a problem with the testicle itself. I just feel so sorry for him, he is going through so much at the moment. I wish I could have the condition for him. We never heard of it before this, and when we have been to hospital, he has caused a lot of interest with nurses who want to take a look, as they haven't seen it before. any one else had experience of this weird thing called hsp? wendy

user1479980998 Thu 24-Nov-16 10:09:50

Hi,

hope she is okay now, we thought it was meningitis too, as the rash didn't fade under glass. Its very worrying and upsetting watching what's happening. you just want to take the pain for them

dollybird Mon 28-Nov-16 11:02:06

D had HSP 3 years ago when she was 10. She complained of her legs hurting, took one look and she was covered in purple blotches all over her legs and I thought it was meningitis. We called NHS Direct and they made an appointment with the duty GP at the hospital for the next morning once they were satisfied that it wasn't meningitis. The GP knew what it was straight away (turned out she'd had tonsillitis, but had only seemed to be a bit under the weather - apparently it's the immune system reacting to an infection/virus). They did a blood test in the hospital to test for protein, and then we were sent home and had to do regular urine tests for quite a few months. She was very sick for about a week, and lost a lot of weight. Her kidneys were not affected, and the bruising took about 3 weeks to fade completely. She has had no further problems since (touch wood).

user1479980998 Mon 28-Nov-16 18:36:13

Thank you for your reassuring reply. Its good to hear positive stories when you are worried. I hope he is over the worst. blood test on Saturday revealed no kidney impairment, but he is exhausted, and has tummy pain and feels nauseas now. 9 days in , so hopefully he will start to pick up soon,

thanks again

beautifulgirls Mon 28-Nov-16 19:21:25

My daughter has been fine thankfully since her HSP last year. She didn't get any renal involvement and has had a few routine cough and cold type infections without a flare up. I think and hope that we wont be likely to see it flare up again - though I'll watch her carefully.

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