Hsp vasculitus

[Grenola]

Anyone with experience?

My 5 year old has. Quite severe in hospital. His urine is dark brown, off the scale protien and blood in urine and BP that can't be kept down. Even after 3 diff BP meds.

Its been 11 days since he got in. 4 days in hospital..... I'm scared now.

What should I be expecting for treatment? And how will we know if he kidne

... His kidneys have long term damage?

I have no experience, @Grenola, but just wanted to offer you a hand hold.

Have the doctors been able to tell you anything about how things should get better? It must be so worrying for you right now. Hopefully someone who has experience will see this soon.

They have been taking a wait and see approach but treating the high BP.

Thr last few hours he has vomited lots, had nose bleeds and spiked a fever with low oxygen. So they putting him on iv antibiotics, fluid and Paracetemol
I'm so worried his kidneys won't recover from this.

Thanks for replying. It's lonely and I've been so frightened for him this eve. Think fatigue doesn't help either

The poor wee boy. And it must be absolutely exhausting for you. Do you have anyone to support you?

Here alone. Only 1 parent can stay due to covid
I have a disabled child at home too so I feel very heavy hearted.

More tests today and a kidney socielsrbhas finally seen him. She says it isn't hsp now

Oh goodness, @Grenola, that is so much to be coping with. 💜 I hope you get some more answers tomorrow.

It looks like the autoimmune board is pretty quiet, so it might be worth posting in another area to get more general support. I’ll have a look and see where might be best. Thinking of you

It looks like Chat might be the best place to get some traffic and support, OP.

Thanks @SparklingLime

Do you know what type he has? The vasculitis support (UK) group on fb is a brilliant support group who can answer questions, there's also the Vasculitis U.K. website - https://www.vasculitis.org.uk/about-vasculitis/frequently-asked-questions they have a helpline and are absolutely amazing

I was diagnosed in Feb last year so relatively new to it but I think adult and child can be completely different. I hope you get some answers from the drs soon

Thinking of you and your little boy, @Grenola. I hope you’ve had some rest and that the situation is becoming clearer.

Hello
Thanks @SparklingLime my son is in a much better situation today. The bo medication and antibiotics seems to be helping him cope with the illness.
Also a new specialist has taken him on has diagnosed him as having Glomerulonephritis. He's had an uktr sound which would suggest this diagnosis is correct, however it will take a week for. His bloods to be analysed to a degree to confirm this. I am hoping it is this as there Is hope of a full recovery for him. But she said if it isn't then she has ideas for the next steps. His kidneys are still not working properly but his medication is protecting his body from damage. We are hoping that in a few days we can go home with a treatment plan and return to the ward for day visits instead of staying in.

Thanks for the support at a very lovely time the other night xx

Oh that’s wonderful, @Grenola! Once you get the right care on board, it makes all the difference doesn’t it? You’ve been through such a worrying time though. If you can, do let me know how he progresses. Little ones are so resilient aren’t they, thankfully! 😊

So pleased to hear of the good news

Just an update. We have just got gome with blood pressure meds antibiotics and laxatives. I have to test his urine daily and he goes to clinic weekly for bp and urine anaysis.
He has Glomerulonephritis caused by an autoimmune response to likely an infection. His kidney disease should be an acute reaction but will be tested for the next year to alter medication and rule out a long term kidney disease.

A very scary few weeks, and I am utterly exhausted now I'm home. Bless my son, taken it all. In his stride but he looks so thin and pale.

X

This happened to my DD when she was about 6. This happened twice in 6 months but she doesn't have long term kidney damage thank goodness. Giving you a handhold xxx

@madcow88

Thanks for your message.

How long did your daughter have visible Blood in her urine and did stay on the BP medication for long?
My sons urine isn't getting any lighter and still very throthy.

It was about 4 weeks if I remember rightly. They kept her in hospital for 3 of those weeks and they stopped the medication a couple of weeks after symptoms subsides.

Then 6 months later it's happened again (apparently they can only get it once) she was on meds for about 6 months after to ensure it didn't flare up again.

Thanks x

We stayed 1 week and have a plan for fortnightly monitoring. I'm just worrying all the time he looks so pale and puffy eyes are back today.