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dd has henoch schonlein purpura (HSP)

(18 Posts)
Windowbasket Thu 10-Jan-13 18:28:00

That's it really - 8 year old dd has had this for 4 weeks and it's showing no signs of going away anytime soon. Each time we think she's on the mend and she's feeling ticket-boo - a few hours later it's all bad again, too painful to walk etc. I just wondered if there was anyone out there who had been through this with a child who I could talk to? We have been told that she can go back to school - but I don't see how! I certainly wouldn't want to send her at the moment as she is so up and down. For instance, she has been fine all day today until about 4pm - and now she is on the sofa and I will need to carry her upstairs to bed tonight. She probably still won't feel up to walking in the morning (too painful) - but by, say, 11am might be feeling a-ok! We are on a perpetual rollercoaster at the moment! Any advice or tips would be appreciated.

ARightOldPickle Thu 10-Jan-13 18:39:30

Hi, one of my DDs had this when she was in her early teens. I can't remember the specifics because it was rather a long time ago (DD is 30 this year!) but she was off school for just over half a term and we had to ask for 'special permission' for her to wear trainers when she went back cos one of her ankles was still swollen. That said the school were pretty good though and sent regular work home for her which she did when she felt up to it - like your DD she was a bit up and down.
So sorry no real advice but she will get better eventually, it just takes time!

clam Thu 10-Jan-13 19:02:59

Hi,
My dd had this 10 years ago when she was 4. Not sure how much pain she was in, as she might have been too young to articulate it properly - although the day it all kicked off we were in London and she was whingeing and wailing all day, meaning I ended up carrying her miles. Didn't realise she was ill though, and have felt guilty about feeling frustrated ever since!
Then the rash appeared and the GP sent her straight to the local hospital, as there was protein in her blood and urine and her blood pressure was sky-high. It didn't settle in a few days, so we were referred to Great Ormond Street for biopsies etc.. She was put on steroids as her kidneys were scarred and leaking protein. This lasted 6 months.
She has annual reviews at GOSH, and 5-yearly GFRs (where they pump dye through the kidneys to check for damage) but, other than that, is totally cured, and has been in good health since she came off the steroids.
I do know of other cases where children can be confined to wheelchairs whilst the swelling and pain lasts. We didn't have any of that, fortunately. DD started school around that time and she hardly missed any. She was tired, yes, but it was hard to know which was the HSP and which normal "starting school" tiredness.
Hope this helps. Good luck.

clam Thu 10-Jan-13 19:06:20

By the way, talk to the school and see how they're able to help and make allowances for her. Primary school is easier to manage with children staying in at break and sitting down more - no movement between lessons, for instance - and no PE I should think. And if she dips, they can call you and you could arrange her coming home. Or, if she's poorly first thing, but perks up later, you could take her in then.
Any schooling is better than none.

NorthernLurker Thu 10-Jan-13 19:10:21

No personal experience but it sounds like you need to arrange with the school for part days. I would suggest maybe 1-3 to start? Giving her plenty of time to get started in the morning and still attend school for a proper session. That's probably better than say doing 11-1 when a big chunk will be lunchtime and she'd come in to school half way through the morning. Be clear with them that she CANNOT do full days and that it's your way (when they will one session attendance mark on the register) or not at all (when they will get 0)

BigPigLittlePig Thu 10-Jan-13 19:14:58

I had this when I was 9! I missed a half-term of school (I went intermittently but only ever for a few hours as was too tired/joints too painful) but they sent home work for me to do.

I would speak to the school, I'm sure they would be more than happy to do something similar. They were certainly very flexible in my situation (admittedly 20 years ago now)

Porkster Fri 11-Jan-13 00:46:16

My 10 year old had it about 6 months ago. It lasted about 2 weeks.

I found it flared up again a little if he got very cold ie went swimming.

I think maybe he had a mild version as he didn't need any time off school, despite pain in his knees and ankles.

The only thing that bothered him was the dreaded blood tests.

AttilaTheMeerkat Fri 11-Jan-13 09:11:43

Windowbasket

Have got the t-shirt on this one.

HSP is seen at any time of the year but can be more commonly seen in winter months.

I had been worried about the appearance of my son's legs a few days beforehand (he had petechiae) and had taken him to the GP. GP thought it was viral and prescribed acqueos cream (which did nothing) but HSP was not mentioned; I do not think HSP would have recognised it readily anyway even if the spotting had been seen. He was well in himself other than this.

It was actually diagnosed by a great paediatric consultant whilst we were on the first day of our holiday in Florida. She took one look at his legs and knew immediately what it was. Further blood and urine tests were done and indeed confirmed HSP.

Weirdly enough we met another family outside the hospital whose DD was in a wheelchair due to the pains in her legs caused by HSP; she had also been taken about an hour after my DS was. They were at the hospital we were at because the previous hospital had given them the runaround.

Ds had a cold a couple of weeks beforehand but the overall causes of HSP remains a mystery.

A year on, you would never know that he had HSP to begin with and I was advisedby this cons it is unlikely to recur.

He also had pains in his knees and legs because HSP does cause arthritic type pains to arise. It took about a week for these to subside a bit along with the spotted appearance of his skin (his skin from the knees down to his toes including them were covered in spots like those of a leopard) and probably 2 -3 for it to completely disappear.

He was prescribed tablets for his kidneys on admission as HSP can also cause kidney problems to arise. No other treatment was prescribed and he had to take these twice daily for a week.

Porkster Fri 11-Jan-13 21:18:31

Attila - my experience was very similar. I took my son to gp with his puerperal rash, having consulted Dr Google myself and tentatively diagnosed HSP.

GP dismissed HSP immediately as he thought rash wasn't severe enough.

He muttered about 'platelet disorder' and sent him to path lab for blood tests.

I went from rational to 'OMG - leukaemia' in about 2 hours.

I thank God for my friend who is a paediatrician. She took one look and diagnosed HSP and checked his blood results for me.

He has so far, had no recurrence.

clam Fri 11-Jan-13 22:26:25

I must have been lucky then, as my GP took one look at dd and said, "Hospital. Now."
Actually, it wasn't the HSP itself that was the problem particularly, but the ensuing kidney complications, which are supposed to be rare.

clam Fri 11-Jan-13 22:34:41

Actually, can any of you more scientific types tell me whether the fact that dd had her MMR booster jab (plus chicken pox and whatever else) a couple of weeks before this all happened is relevant? I've read that HSP can be triggered by the immune system violently reacting to a virus.
I only ask because have just had a letter home from school about another combined jab (tetanus, diptheria and something else) coming up (Year 10). I've a vague idea it's something to do with live vaccines, but there's little point in asking the GP as they'll never acknowledge that anything could be adversely linked to her jabs.

Porkster Sat 12-Jan-13 10:45:38

Clam, I don't know the answer but your post has made me think.

My ds2 has always had horrendous reactions to jabs, whereas his brother had none.

AttilaTheMeerkat Sat 12-Jan-13 13:34:44

"Actually, can any of you more scientific types tell me whether the fact that dd had her MMR booster jab (plus chicken pox and whatever else) a couple of weeks before this all happened is relevant?"

With regards to my son, no. He had the MMR vaccinations and boosters many years before HSP. I was told that the overall causes of HSP are not fully understood but it can be that upper respiratory or such types of viral infections can in some cases trigger HSP. In his case, he did have an upper respiratory viral infection two weeks prior to this happening (and his petachiae started after that).

brad2007 Fri 28-Nov-14 01:34:37

Hi all my little girl has just been diagnosed with hsp she is 5 I have a community. Nurse coming out in the morning to check her blood pressure I have to do regular dip stick checks on her urine.she is very distressed with her legs been so itchy any advice will be greatly appreciated mummytoapoorlyprincess.

Rosmae Tue 06-Jan-15 11:29:11

Hi Brad2007

How are you getting on? My daughter was diagnosed in October but to be honest, it's all a bit of a shambles! Who is overseeing your daughters care? Hospital/GP? X

Millionairerow Tue 06-Jan-15 22:57:51

My friends daughter had this. Lasted about 8 weeks. Lots of rest needed I believe.

Rosmae Wed 07-Jan-15 09:32:22

Yes, it's hard going as my daughter has seed well generally - only really close family and friends that see it has quite an impact x x

Rosmae Wed 07-Jan-15 09:34:31

Seemed! She's had it since June but they have said it can flare up and down x

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