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Children's health

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Original poster

has anyone's dc had a kidney biopsy?

35 replies

whoops · 26/09/2008 11:43

Ds is probably going to have to have one next week.
Can anyone tell me what to expect from him painwise after etc?
Thanks

OP posts:

Are your children’s vaccines up to date?

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debbiewebweb · 13/10/2008 17:46

Hiya, was just going to hyjack post if that's ok. Our dd1 has leaky kidneys but we have been told steroids won't help but if they continue without improvement a biopsy may be needed. I'd have thought a scan would have been their first suggestion but apparently not. DD's kidney problem was caused by her HSP (henoch schonlein purpura)so may be this is why steroids won't work - do any of you know about this??

Original poster

whoops · 19/11/2008 21:33

Just thought I'd update as we saw the consultant today.
Ds hasn't responded to the pred so he has been put on Ciclosporin (sp?)
His protien level in urine was higher and blood levels were a lot lower.
His bp was also still high so his enalipril has been increased again.
I am glad he is being weaned off the pred now as his behaviour hasn't been doing me any good!

OP posts:

morocco · 19/11/2008 22:48

good luck with the cyclophosphamide. what kind of outcome are they hoping for from it?ds1 had this for 8 weeks. it didn't work initially for him as he went on to have 2 more relapses more or less straight away but after that, we've had 18 months of remission, a bit unexpectedly. but very welcome
I can well imagine it will do you all good to get a break from the pred and pred rage.

did you ask on kidcomm or nephkids about different protocols for treating his condition? there's people on there on all kinds of different drugs.

morocco · 19/11/2008 22:54

oops - just re read and your ds is on cyclosporin not cyclophos. so a longer term treatment - how long are they planning on him staying on it for? is it easier to take than the steroids?

Original poster

whoops · 20/11/2008 08:09

It sounds like he could be on it for a long time as the consultant said that he would need a biopsy every 2 years while he was on it
He has to take it every 12 hours, it is an oral solution again and it can be mixed with orange or apple juice. He'll have to have regular blood tests I think to start with to check the levels.

OP posts:

morocco · 21/11/2008 20:33

good luck with it. I hope it does the trick and your ds gets a break from the protein leaking and the steroids. it has worked well for a lot of people I know whose children have taken it. how is your ds coping with it all?

Original poster

whoops · 23/11/2008 08:12

Thanks!
Ds is fine with it all other than the frequent blood tests! Although the promise of a bag of gogo's sorts that!
I've offered to have the flu jab with him too so that there is something I can go through with him.
I think I'm the one that wasn't dealing with it all very well but I think I'm ok now!

OP posts:

morocco · 04/12/2008 21:07

hi again, not sure if you're 'watching' this thread or not. hows your ds doing? mine has just started relapsing so maybe you have some tips on dealing with the whole pred thing and 6 year olds?

Original poster

whoops · 28/01/2009 22:06

Hi not been watching but have added it now
I came across this again while I was searching for something else!
Ds is doing ok the cyclosporin seems to be working but ds seems to be having more blood tests as they keep needing to change the levels!
He only has a couple of weeks left on pred as we have been weaning him off it and his behaviour seems to be a lot better
His blood pressure is still high but they haven't changed his enalapril the last few weeks as they think it is coming down slightly with coming off the pred but I'm not so sure as his bp was high before he started on the pred after the biopsy.
How is your ds doing?
One other question do you claim dla for your ds? it has been suggested by one of the community nurses but I wasn't sure if we would get it

OP posts:

morocco · 28/01/2009 22:42

glad the cyclosporin is working and the pred taper is going well. fingers crossed for a pred free remission!

its really good that dla's been mentioned tbh,noone ever told us about it til we phoned up the guy from nephrotic.co.uk (I think it was) about 2 years after he was diagnosed.

quite a few people do claim dla if it's affecting your day to day life. we are lucky atm as will's relapse was the first in a few years and he did so so well this time round on the pred. if you want to claim, get advice before you fill the form in from someone who knows what they're doing. there's lots of good advice on here as well about dla claims. think about the worst days and how it affects him and you

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