Advice and help: My 14 year old daughter has HSP

I mean HSP following immunisation, not HPV - can't see how to edit my post.

Hi lucynewas

So sorry to hear about your daughter. HSP

is tough on everyone.

My daughter is now 13 but got HSP when she was 12 after a cold with strep throat. I didn't let her have the HPV vaccination earlier in the year at school as she was going through a bad patch of picking up everything after having her tonsils removed. Although the nurses confirmed it is not a live vaccine and would therefore not be a problem for her to have. I am currently waiting for an appointment for her to have it done but naturally was always worried about it given her health issues with HSP.

I've just got her back on an even keel although still has positive protein water readings and worried about upsetting her system.

There appears to be little research into HSP at least when I was looking into things 18 months ago. The BMJ report sounds an interesting read. How did you find it ? Also the Facebook group for HSP is always good when looking for answers.

Kelly

My daughter (19yrs) was diagnosed with HSP last December following a Hepatitis B vaccination so the trigger is definitely linked to vaccines. Hope your daughter improves soon.

Sorry to here about your daughter Lucy, I'm afraid there is no answer it is one of the most mysterious vasculitis rare blood diseases. It is only recent years that people have started to collect and collate stories and make comparisons. Historically because its so rare once discharged from hospital little happened in many cases in terms of follow ups. Statistics show most cases start in children between ages of 6 and 10, however, your daughter is one of a few that have developed later, has she had any previous history of illness? tonsil problems, joint or stomach problems? I think its a case of monitoring and keeping in touch with support groups and your doctor or hospital. One thing proven is lots of rest legs up, try not to worry. This is known to ease symptoms. I wish her well. Feel free to view website http://www.hspsupport.org/main/index.php

Hi my 11yr old son just been diagnosed he was in good health no infections etc suddenly had severe tummy pain rash developed very quickly and his knees elbows and ankles very swollen and now badly bruised ... he was due to get his flu vaccine in school and i now dont know what to do when he finally get back to school.

Thank you everyone for your support - it's a relief to know we're not alone.  The update is that she still has protein in her urine, and abdominal pain, but her BP is fine.  She developed shortness of breath at rest last week, so we had a worrying 48 hours.  The GP has promised to read up and become an expert in HSP - she had only seen one case before L and within the practice the consensus was that the cases they had had didn't amount to any follow up after the 6 months.  She is now just about managing with 2 hours a day in school.  She gets headaches now when concentrating for more than about 1/2 an hour.

She's been a bit better in that she's been able to go to school every day for a couple of hours since I took her to a naturopath who recommended pro-biotics and a tonic to boost her, but not significantly so.

In response to wendy92629 she has a 3 year history of IBS symptoms - although they've never diagnosed it - but she now avoids gluten by choice as it gives her diarrhoea (even foods she is unaware it is in).

I've read that HSP can return and I'm cautious about any more vaccines - but there's never a good time.  She's supposed to be having a her flu jab (bronchiolitis as a baby) and catch up MMR and is due to have Hep A & B vaccines for travel.  I discussed it with the public health nurse, who said she wouldn't do any vaccines during exam years (which will be the next 7 if she goes to uni).

I'll have a look at the facebook support group.

I don't suppose anyone has found any tonics?

I've just been in touch with the manufacturers of the vaccine and they were really helpful.  They have a section called pharmacovigilance, so definitely worth letting them know, so they can find out if there are any medical risk factors to avoid this happening to someone else.

For anyone concerned about their child's HSP.  

By way of an update, my daughter seems to be finally turning a corner 6 weeks after developing this condition - the rash has started to fade and she has started singing to herself again (always a sign that she's happy and well).

Hi! I developed HSP shortly following the HPV jab too, however at the time didn’t even realise the link. I know I didn’t have any other sort of infection to have triggered it,  it’s just later on in life I realised that that was the only change at the time. I wish I had realised sooner so that I could’ve documented it to the nhs/manufacturers etc as it’s made me realise the risks associated with vaccinations. 

I was severely ill for a long time with HSP, it interfered with my life massively and I couldn’t recover from it, in the end I was referred to great Ormand street hospital as my symptoms were very severe and on going as I had been poorly for at least 3/4 months. My legs and ankles were covered in rash and blood blisters. My feet and ankles were so swollen I was bed ridden and had to use a wheelchair at one point because I couldn’t get around. My abdominal pain was so severe and my bp so high that they hospitalised me for a couple nights. Luckily my kidneys were all okay and in tact. In the end great ormand Street specialists prescribed me some medication to control the symptoms and I was on that medication for at least a year with regular check ups. They saw me every 6 months afterwards untill I was 18 as I never fully recovered and have it in a ‘chronic’ form with relapses. 

I wanted to know how your daughter is doing now, and moving forward what you would do regarding vaccinations? 

I’m now 22 and expecting a baby, and after my experience I’m so frightened to vaccinate my child.

Ive read so many stories about baby’s having bad reactions to vaccines and becoming fatally ill, and knowing how ill I became too, it’s made me really nervous. Could do with some advice! 

My daughter is three years old 

She had the viravax vaccine which is a live vaccine for chicken pox which was done privately. The first dose no problems and then a few weeks later after returned back from our holidays she had the second vaccine as the chicken pox vaccine comes i two doses. She had the vaccine on the Monday and then Tuesday starting displaying spots it got worst by the end of the day and eneddd up going to hospital to get it diagnosed as chicken pox so okay I accepted it and then a few days later she started moaning that she could not walk. She was aching her knees,wrists,and ankles started swelling and purplish brusies started to appear. My daughter had no temperature felt well in herself so decide to go to the children’s hospital and then was diagnosed with hsp Vasculitis. My heart dropped they have no idea what causes this and it can’t be treated it goes by itself but in the mean time we have to provide urine samples once a week to check to see if she losing protein and blood pressure check this is done every week for four weeks and then once every two weeks for 7 months and could relapse. 

We are using calamine lotion which helps and certerizine to help wih itching and calpol for the inflammation .