Does HSP every end

That sounds great! It would be really nice to talk to someone my age!

Thanks 

Lucy

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Hi Emily.  So Sorry to hear you are feeling so poorly. I'm Helen (and I started this feed) but my daughter is Lucy aged 16.   She has had her first day back in school today (3 hours) and is now exhausted.  She'd love to be in touch with you and will do so tomorrow.

It's really rough isn't it.  I can't believe how few doctors have any understanding of HSP yet as we mention it to people, we keep finding other people who have had it.  We've seen the GP today who are going to refer Lucy back to the hospital as we are struggling to manage the joint pain and we've had a meeting at school to organise a reduced timetable and a system of resting during the day.

Are you in school at all?  Lucy has had 6 weeks off and has felt very isolated.  She is going to try  half days for a bit with the opportuity to rest where necessary.  Have you been able to have a meeting at school to discuss things like this - it feels better when you have a plan ...and the school will have dealt with things like this before (and have a legal duty to help you).  I know you must be really worried about your work but I  assume you are in Year 10 (?)  - there is plenty  of time to catch up on any work missed.   The most important thing is to get better and stress and worry will make it harder for you.   There are always ways to catch up on work or exams ..... many top flight people didn't get their GCSE's in the standard time .... please don't worry.

I'm sorry you have still got stomach ache - it's miserable. Does anything ease it?  We f

oops technical failure there Emily - sorry!  We didn't find much that helped apart from hot water bottles and distraction but I'll let you Lucy suggest anything else tomorrow.  You must be really worried about your kidneys if you have to have a biopsy etc - I bet your family are too - even if you think they are not supporting you, it's probably that they are frightened and don't know what to do or say.

I'm sorry Lucy isn't online tonight but she told me she'd like to get in touch with you tomorrow.  In the meantime, take care and have a restful night.

Helen   (Lucy's mum)

Well everyone is different i am in full time school and afterschool clubs some days i have some joint pain but the school does nothing. I have some days with really bad pain and i just get on with it people are different and some can take the pain i have not had vomiting i have had it long and am far through this and your daughter could be in the early stages of this virus..

Lucy was diagnosed in early October  Her rash is now gone and she had stomach pain, fever and dizziness in the first 2 weeks (plus 2 hospital admissions).  We are left with the joint pain and exhaustion.  We' re doing out best to handle this but it is very draining.

I only asked about school as you sounded as though you were struggling and wanted to let you know that school should be able to help by making timetables etc easier - have you looked at lucynews' posts?  She has good advice about things a school can do to help. You can't get help til you ask for it ....... x

 

Hi Emily -

I am Lauren's mum - she's also in year 10.  We have started her on pro-biotics and I think they helped her to feel better although she's now stopped taking them.  Probiotics help balance your gut, and may stop any bloating that is causing the pain.  You girl all seem to have strong characters and are getting on with things.  Lucy will be able to put you in touch with my Lauren too.

There is some new evidence that a medicine called rituximab may help with HSP - so make sure you ask your consultant about it too.

Good luck - let me know if there is anything else I can do to help.

Hi Helen

Have you tried Lucy on regular 1/2 dose anti-inflammatories like ibuprofen, probiotics (the ones you have to keep in the fridge), d-lux vitamin d spray (PHE is now recommending anyway in the winter time) and a multivitamin or tonic, as they may help the joint pain and exhaustion.

Hospital consultant is adamant that Lucy should not have ibrupofen whilst the hsp is active because of kidney stressing.  She is on vit d supplement now anyway as her vit d was slightly low.  She has been on  multivitamins for a couple of years anyway so hopefully we've got that covered thanks.  She is having weekly bowen treatments which she finds give relief for a few days. Her GP has just referred her back to the hospital as the protocol says to refer for severe joint pain.  At least she is managing some time at school now ... and is staying very positive.  Sorry I've not been online - lots going on  in the  rest of family too!! H

Hi Emily

Hi Emily

My name is Helen, my son is 15 years old in year 10 doing GCSE's one of them P.E as he's normally such a sporty boy. He got HSP end of Nov 15 and is about 9 weeks having it now. He's really struggling with stomach pain & sickness & do not know what to do for him. He has protein & blood in his urine which worries me. If it's not stomach pain it's swollen joints. Sometimes managing 2 or 3 lessons at school but then needs couple of days off. He's quite unwell at the moment and has missed nearly two weeks now. 

How are you now? Are you still struggling with symptoms? 

Hope you are much better & got more support to help you. 

 

Hi Helen.  My daughter Lucy has had HSP since early October 2015 and is still suffering with severe joint swelling, tiredness and at times /stomach pain and bruising.  As her urine tests are negative, the GP cannot really give much advice.  She is currently on Naproxen (as Ibuprofen had no impact on the joint pain). This was prescribed by the hospital once her urine tests had been normal for 8 weeks.  We are going back to the hospital in a couple of weeks to see what more can be done as the joint swelling in particular is not improving.

Now to helpful things .....  If your son has protein in the urine, he should be being checked at the hospital for kidney problems  .... are your tests being done at the GP or the hospital. Are you being checked at the hospital whenever the urine tests are positve?  Lucy has had 2 admissions to hospital thanks to the urine tests but ultimately all is well with the kidneys.   If he has visible blood in the urine you should get him checked at the hospital urgently.

Whilst the HSP is active, it is suggested that you should not take ibuoprofen because it also stresses the kidneys.  Paracetamol is ok - Lucy also tried co-codamol, or paracetamol and codeine separately.  There's an awful lot of trying to see what works and what the body can cope with in this.  Lucy found the codeine a problem when her stomach was already sore - ranitidine (on  prescription) before meals helped this by protecting the stomach.

Lucy has had regular Bowen treatments for the  last 3 months which have helped a little. She's in Year 11 - we've had to cut down to 7 GCSE's and she generally goes into school at 10.30 as mornings are the pits.  Her school have been  helpful and relatively sympathetic but are not big enough to give her a different timetable.  You should be able to get help from your SENCO at your school about allowances in timetabling/homework etc.  If your boy is in Year 10 - don't panic .... there's plenty of time to get better and ready for GCSE;s

It's a really grim thing, this HSP.  When Lucy was diagnosed, we were told it was really rare ....I think that this forum suggests that it isn't THAT rare!!  Do hope  your boy is doing ok.  Lucy is desperate to get back to normal life ... she wasn't particularly sporty - it must be so much harder for your soh,

 

Thanks for your reply. I do hope Lucy is back to normal life soon and is managing with some schooling, I hope she does well in her GCSE's. We do not have the same worry with Matthew being in Year 10 but he is missing quite a bit of school.

He was re-admitted yesterday with severe abdominal pain & sickness, all under control now & he slept well. He was given ranitidine (something we had not been told about despite him suffering with abdominal pain on & off for 9 weeks!) and this seems to have helped. We always worry when it gets bad as before Christmas he had bowel intersuseption & was rushed to Leeds General for bowel surgery but thankfully when we got there it had stopped & surgery wasn't needed.

Blood & protein has been in his urine from the beginning of this nightmare & is being monitored by myself every other day at home. When he was at Leeds he saw a renal specialist who said his kidneys were functioning how they should be but they are "unhappy" at the moment. Hopefully once this dreadful illness has gone the protein & blood will start to decrease.

I wish all the best to Lucy & your family, it's difficult for the child but can be hard as a parent to cope with, you just want your child to be healthy again. I can't wait to see Matty running around again but think it will be a while.

All the best & thanks again.

Helen

Hi Helen

Sorry not to have replied .. a busy week of hospital appointments and a central heating problem - nightmare!  Really hope Matt is improving now.  Awful as the hospital admissions must be - it does mean you are getting more specialist care than the average GP can offer.  It must be a dreadful worry for you.  Lucy "no longer has HSP" as they can find no traces in her system but she is still  getting the stomach pains so I don't know if these are flare ups or the body remembering the pain and using it to make her rest if she tries to do too much.  Have got everything firmly crossed for you - particularly with the kidney worries.

Lucy has still not made it into school every day of a school week .... and we are not managing early mornings so she goes in around 10.30.  We have finally been referred on to Rheumatology by the hospital paediatrician as her joint pain is very severe despite being on top doses of naproxen and paracetamol.   She is on ranitidine too for stomach protection given the drug level.  She finds it hilarious that our aged dog is also on it!  Her fingers are swollen and she has joint pain  all over which is disabling.  Hopefully we'll get more help from the next bunch of specialists!  In the meantime, the fatigue is awful - I had wondered if we were in Chronic Fatigue Syndrome territory but the Paediatrician feels that it is just the stress of living with such severe pain.

Quite frankly - life would be a lot easier with a broken leg that everyone could understand eh

All the best

Helen

Hi Helen

It was good to hear from you & I'm sorry for the lateness in replying...don't know where the time goes!

I'm sorry to hear Lucy is still struggling with stomach pain and joint pain & I really hope the next lot of specialists can make a difference. If she "no longer has HSP" it must be her body's way of telling her to stop & rest.

Matty is still getting occasional stomach pain/sickness & joint pain more frequently but he'd prefer this to the stomach pain. He sometimes makes it into school for half day or not at all, just depends on how bad is legs are. They swell up quite easily & hurt him a lot. He's had it nearly 14 weeks & I was hoping he'd be over it by now but not so lucky. Still has protein & blood in urine which I check every other day & hospital aware of this.

This illness is so debilitating, Matty gets down sometimes & angry other times at his situation. He knows he needs to forget about playing football this season & look towards the summer when hopefully he'll be able to play his cricket.

I really hope Lucy starts making an improvement & would love to hear from you how she's getting on.

Yeah a broken leg would be so much easier to explain - no one has heard of HSP!

Dear Helen

I'm so sorry to read this. I've done quite a lot of research and there is good evidence that gopo rosehip is as effective as anti inflammatories for joint pain. And there's no gastric effect. I think its worth trying Lucy on them. Also, mebeverine for the abdomen pain. Lauren is still on them.

I do believe that this is part and parcel of an autoimmune condition and therefore is worth seeing a rheumatologist if you can get a referral. Looking back I had a post viral condition aged 17/18 that was debilitating but never diagnosed and now 30 years later have inflammatory arthritis.

Hope the rosehip works for her.

Hugs Lucy