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Anyone else's child had HSP (henoch schonlein purpura)?

(12 Posts)
ElinElin Thu 10-Jul-14 09:33:03

4 weeks ago my daughter came home from school, she felt absolutely fine but she had big and small red spots all over the back of her legs. Long story short we ended up in A&E and after seeing 4 doctors on the same evening she was diagnosed with HSP. While we were in hospital she developed joint pain and swelling on her ankle to the point she could not walk on it. In the last 4 weeks she has had joint pain on and off severe to the extent she has been on crutches more days then she has not. Rash was at times really bad and blistering on her feet. I had never heard of HSP. It is an auto immune condition that causes inflammation in blood vessels, joints and can effect organs such as kidneys. The last 3 weeks she has been in and out of hospital about 6 times. This week she is alot better. I was just wondering if anyone else has had experience with this and if it went away quicly or still problems after months?

Rosmae Tue 06-Jan-15 11:32:23

Hi ElinElin
Hope you are okay - my daughter started with HSP at the same time as yours but a very 'mild' case (of the rash anyway. It is still ongoing. Has yours settled yet? X x

dinkystinky Tue 06-Jan-15 11:35:48

Yes- DS1 had this (came down with first case of it in October). They can have flare ups of it for along time afterwards - he had a flare up of the joint inflammation again several weeks afterwards and has had flare ups of the rash over the past 3 months. DS1 was on weekly blood pressure and urine tests for 3 months (at the gp) and is now on monthly check ups for the next 3 months. Rosmae - we were told it should settle down within 6 - 8 months.

Rosmae Tue 06-Jan-15 11:42:55

It took dermatology to diagnose this in Oct since having rashes since June, I think the paediatrician is still not 100% convinced it is HSP and she is seeing haematology again this month. Although, I touch wood saying this, it is settling more now!! I'm just a bit concerned as no-one is regularly dip sticking her urine, I've been told to take some in if 'it worsens'. Which departments did you see at the hospital? X x

dinkystinky Tue 06-Jan-15 13:19:50

We were seen by the paediatric consultant at A&E. DS1 was really bad though - he could barely walk (I had to carry him in) and the protein level in his urine sample was borderline concerning. It may be that your DD's protein/blood trace test was totally clear so they are less concerned about that aspect.

Rosmae Wed 07-Jan-15 09:39:43

Hiya, yes it has been - all blood tests have been clear and in various blood tests her kidney function has been normal. Rash has been fairly slight too apart from the very initial rash which covered her neck in bruises. She had some very severe headaches and started having staring episodes which was the most worrying part but they seem to have gone. Her joints still 'give way' and she has some ongoing stomach ache.

dinkystinky Wed 07-Jan-15 16:40:54

Bless her, its miserable to see them when they are feeling so ill, and vulnerable, and be so unable to help/give them anything to make it go away isn't it. I hope the stomach ache and joint issues go away soon too x

Rosmae Fri 09-Jan-15 09:02:27

Thanks - certainly got my fingers crossed. Think when your child gets something you assume there will be more support but this seems to be a funny, not well known thing really x

ElinElin Sat 31-Jan-15 08:36:53

Hi, my daughter is fine now. Hope your dc are on the way to recovery too. My DD was really bad for about 2 months. At the time it was difficult because doctors could not say how long it would last etc. for 3 -4 weeks she had severe joint pain. Ankles, knees and sometimes wrists. She was put on a strong anti inflammatory medicine and the joint pain gradually got better. Then she started having severe tummy pain , crying herself to sleep at night. I felt so helpless. We saw one consultant and he said the anti inflammatory medicine was causing tummy pain so we stopped that and tunmy pain got better. She then got some problems with kidneys and had to limit her liquid intake and take medicine. When she went back to school in September she was fine and has been fine ever since. We have to check urine every 2 weeks but apart from that she is fine. You can still see some marks from the rash but they are fading. I agree there was limited knowledge and support around for HSP. Hope your DC are also better now .

Rosmae Tue 17-Mar-15 21:37:38

Thanks for messaging - we've now had every blood test under the sun now (I think!) so they can be fairly sure when we next see paed that it is HSP. Touch wood, the rash is decreasing but other symptoms are still knocking about 'tired legs' / 'itching' / 'various stomach issues'. Hopefully on the way out. Glad to hear things so much improved for you x x

ElinElin Wed 25-Mar-15 21:08:23

It's back. sad dd has been fine since September. Last week she started complaining about tummy pain. Saturday she had tummy pain, feeling nauseous and fever. Took her to doctors cause fever was 39.4. Did Urine sample and Plus 2 blood. Doctor said urine infection. Next day still fever and at bedtime I noticed it was red around her knees and ankles and hot to touch. Took her to hospital and they said they think it's thr HSP that has come back. Still plus 2 blood in urine. They did bloodtest and she is going to hospital tomorrow. They said they want to repeat blood test as platelets are low. I'm not quite sure what that means. She was off school last 2 days, went in today but school phoned us to pick her up at 2pm. Fever again today. Anyone else dc had fever with the HSP? How are your DC doing now?

Reekypear Thu 26-Mar-15 01:28:10

Try the facebook group. Lots of traffic.

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