Hi mine son was diagnosed with hsp in December 2016.
I never knew about this sickness,
Hospital wasn't helpful as they give me a small p**s of paper and send us home.
By that stage he was screaming from pain in his tummy and again they sent us home it got to that stage that he stopped walking and had blood from his bottom.
They put him on oral morphine from pain.
Now it been 13 months that he have hsp and only now they given us steroids to use and they want to use new medication colchicine is any one of all users been given them to help your child??
Hello
Sounds like you've had a terrible experience with no support from the hospital. I think this illness is so rare they don't know how to care for it.
How old is your Son? My Son got HSP age 15 in Nov 15, he went onto steroids after a similar period to your son. He's now on Azathioprine for joint pain, Enalapril to suppress the amount of protein leaking from kidneys plus iron & vit D supplements. On the whole he's much better but rash still comes n goes.
For tummyache he took Ranitidine (after advice from hospital) this did help his stomach pain which he always said was the worse thing, even worse than swollen/painful joints.
He has checkups at the hospital every 6 weeks inc plus blood tests.
I hope you get support and your Son recovers quickly.
Hi Helen
Thank for your response
He is 11 now, and it if horrible that I can't help him and take pain away I'm sure u felt the same way
As for now they said there is no problem with kidney but he did had problems with testicle
Now he is on declafenac 50 mg and steroids and they want me to give new meds with I'm not sure about
He have arthritis and hsp Leukocytoplastic v, and bowel problems.
It took long time for them to put him on steroids and they keep sending you from one Dr to other as they don't know with department to send us.
Hope your son feeling better.
How did you cope with all this situation?
Hope you had much more support, as you said don't think they do know about hsp and how help child and perent.
There was a lot of trips to hospital as he was in so much pain and they would just say take paracetamol he will be fine, when as mum you can see your child is in agony and paracetamol don't do anything.
Yes it's awful to see your child poorly and you are left helpless in being able to help.
My Son could only take paracetamol too because ibuprofen not good because of his kidneys.
It was a difficult time when he was at his worst, not knowing when one of his symptoms might flare up. The stomach pain & sickness was just awful & it used to carry on for hours. At the time he was in yr10 and sometimes would only be able to do a couple of lessons.
Apparently it does go but he's had it two years now and is still lingering.
Helen
Omg bless him it long time.
Have they give you medicine called colchicine 500* to try?
I'm unsure to use them our no as they can damage kidneys
Morning,
No, he hasn't been given that one & probably never would be if it can affect kidneys. That's why he can't have ibuprofen. He's had two biopsies and they are keeping a close eye on him,
If your Son's kidneys are healthy maybe this medication would be ok as his kidneys strong enough to work with it. What is the medication to treat?
Do lots of research if you feel uneasy about it.
Helen