has anyone's dc had a kidney biopsy?

[whoops]

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

bump

hi there

ds1 hasn't had a kidney biopsy but I know lots of people whose kids have had one . have you tried asking on one of the kidney forums as well? most people I know said it was more of a stress and worry for them beforehand and the biopsy itself went well and recovery was quicker than they thought. how old is your child? if you don't mind me asking, what is the biopsy for? (sorry for nosiness, just wondering. my ds has a kidney condition but we've so far avoided biopsy)

I'd be interested to know too. My dd (11) has unexplained haematuria and having failed so far to diagnose a cause her consultant has suggested a biopsy. He thinks it is probably a genetic benign condition (DH, SIL and FIL also have it) but says a biopsy is the only way to confirm.
I hope everything goes well for your ds.

ds is 7. he has been found to be leaking a lot of protein into his urine. he has had blood tests which came back showing his kidney function is fine. he had am ultrasound scan on them on thursday and the woman doing the scan said that he was most likely going to need the biopsy as the kidneys looked of abnormal mass. the consultant had told me this was the most likely thing to happen next as it is the best way to find out why he is leaking tim protein.
can I ask what forums you use as this is all new to me as we first say the consultant a week 10 days ago and he seems to be arranging everything quite quickly as if thinks this has been going on for over a year due to some results on his file from when he map admitted to hospital for something different in july 07.
thanks kiddiz I think it's costing me a fortune though as I keep promising him a treat everything if has to be a brave boy for having blood tests etc!

my son also leaks a lot of protein. he was diagnosed aged 2 and has relapsed on and off since then but is currently in remission. have you started on steroids? is he seeing a specialist consultant paed nephrologist? if not, it's worth asking to be referred to a bigger hospital imo. how is your ds at the moment? I only know lots about ds1's type of condition and in that case, if they respond well to the steroids, it is not considered necessary to go straight to biopsy. that doesn't mean it's not the right thing for your son. i have found though that there is no harm in getting a second opinion and in making sure we are seeing the experts in the field

come and join us all on kidcomm.org if you like, it's great and really friendly, an email group rather than a regular forum. even if your son's diagnosis doesn't fit the ones mentioned, you will get a warm welcme and lots of info about biopsies if nothing else
www.kidcomm.org/kidcommemail.htm

Not sure if this helps but I had a kidney biopsy couple of years ago. Didn't hurt very much at all and the recovery time was very fast. Couple of days with a slight dull ache in my side. Obviously might feel bit worse for a child. The needle they use to take the sample seems quite long and scary, but will not be as big for a child. And he won't be able to see it. I wasn't sedated but they may offer something for a little one. Best to ask and know exactly the process so you are prepared and pass on as little anxiety as possible to your ds. Hard I know!

Morocco - we are seeing a pead nephrologist I think he feels the amount of protein is too much - he gave me over 600 of a figure of how much protein was there and there sure be 23 (or someting like that!) He hasnt said anything about how to treat this yet just to find out why it is happening, again because he showed signs last year I think he wants to know the reason why they are leaking.
I will pop over to the Kiddcom and have a look thanks!
Bedbug - thanks I have been told he will be under general for this - possibly because of having to stay still and also so he can't see what is going on.
dh thinks he should go straight back to school the day after but I don't think he'll feel up to it

look forward to seeing you post on kidcomm! do come on and let us know a bit more about it. do you have any kind of provision diagnosis or know what he is thinking the biopsy might show?

I'm not sure about school, he might be told not to jump up and down a lot for a few days afterwards (lol - like any boy that age can be made to sit still)

We have no provisional diagnosis at the moment, I am still waiting for the consulatant to ring me with details from the scan and whether he is going to go in on Thursday.
He seems to think there is a problem higher up in the kidney so it's a case of just waiting and seeing what the biopsy show I think.

Ds had the biopsy on Thursday and we ended up staying in until Saturday afternoon as his blood pressure was high and wouldn't come down!
They have given us an initial diagnosis of FSGS and have put him on Steroids and medication for his blood pressure. We also need to keep im on a low salt diet.
They aren't sure if the steroids will work but they wanted to start him on it to see as it will take 6-8 weeks to get the full biopsy results and they are also sending some blood off to GOSH to test to see if it is a genetic problem

hope your ds is doing well and you are also ok. sounds like the consultants are well on the case. I will pray that you get the results that you want in a few weeks time.

ds1 has m c n s - we presume - he hasn't been biopsied as yet as he is steroid responsive(it presents the same as fsgs and initial treatments are the same which is why they don't often biopsy, only a biopsy can tell and even then it is hit and miss as it depends on if they happen to take the particular affected area or not on the biopsy). there are loads of parents on kidcomm whose children have fsgs or similar. we all know what you are going through right now.

can you get to see the consultants who work at gosh, they are very good.

how are you feeling? It is a shock I know. hang on in there and feel free to email me if you want to chat offline (can you CAT?)

Hi, was going to recommend the kidney pt's federation website, they had a good child-friendly explanation of the renal DMSA scan that DD had last week. I then realised your DS has already had it. I hope things work out ok for you and your DS.
We go back for the scan results this week, DD has persistant haematuria and proteinuria and most likely has Alports syndrome.
This can only be confirmed by biopsy but as there's no cure and her father has it (he's had a renal Tx) there's not a lot of point her having the biopsy.
Did your DD cope well with it, how old is he?

Morocco, yes the consultants have been great, he spent nearly an hour going through what they had seen when they had an initial look at the biopsy and he was supposed to be going on holiday!
I have joined Kidcomm but not posted anything yet will feel braver once things are a bit more settled!
I am ok, just seems a lot to take in and learn about!
Ds is fine too - he just seems to be his normal self and you wouldn't know that there was anything wrong!

will look forward to reading your posts on kidcomm!!

it's a very individual condition. every child seems to respond very differently. it can take a while for the doctors and you to find the best combination of treatments that work for your child. do you think there has been any trigger for the start of this condition?

it's brilliant he is so well in himself. that is fantastic.

what dose of steroids are you starting him off on? the steroids can affect mood and sleep quite a bit - just to let you know.

They have started him on 35mg prednisolone, The doctors warned us about affecting mood and weight but they didn't say anything about sleep. Also do you know if we need to know about contageous diseases or is it just chicken pox we need to worry about? the Doctor told us so much on Friday night I can't remember everything he said

that's the same dose ds1 usually goes on. is he ok taking the tablets? does he have the enteric coated ones? ds1 likes them best, easiest to swallow and not as nasty tasting.
I'm sure your consultant would be fine with you phoning or emailing if you have more questions or need to clarify things. I tend to make lists of questions and then write down the answers these days - otherwise I forget within seconds

that kind of dose plus the fact he is leaking protein will affect his ability to fight off illnesses. when ds1 is on high doses, we usually keep him off school/nursery so he doesn't get exposed to so many bugs. not everyone does this but a lot of people do. it also makes him incredibly knackered after lunch so being at home is nicer for him as he can do things at his own pace. those hand spray things are v useful for when out and about for bug killing btw. I would personally steer clear of people with obvious coughs and colds if possible. did he have his mmr? cpx is something to watch out for, if exposed there is a jab he can have or if he comes down with it then get him acyclovir, it stops cpx in its tracks! ds1 had cpx a few years ago and the acyclovir was amazing.

has he had his pneumovax jab? this is v important. also, he can have the flu jab although I'm not sure if I would give it or not when ds1 is on high doses. you can also have it to reduce the chances of you catching it and passing it on

i bet your head is spinning right now. take time out to relax and take care of yourself as well as your ds! do you have supportive family and friends?

Ds tried taking a tablet in hospital and couldn't take it so has soluble which he finds disgusting so we have a drink ready for him once he has had it!
is 35mg a hig dose?
I have asked the school to let me know if anything is going round, I know there is another child in the same year as ds who has an immunity deficiancy and she is supposed to be told when there are things going round but I spoke to her earlier and she told me the best way to find out! I know she has had problems with the school too with attendance.
The consultant is good and did tell me to ring if I Had any questions, we are back at clinic on Thursday for more blood tests, blood pressure checks etc.
ds has had chicken pox & shingles so the dr seems to think he will be ok but they are going to check his blood for immunity, I will ask about the flu jab too!
Yes my family are great, my Dad came up to the hospital on Thursday and has rung everyday since,
The hard thing is trying to explain this to people who know ds has been in hospital and have been asking how things are but is difficult when you are still trying to figure it out yourself too!

soluble is truly disgusting, it's true. try dissolving it in the tiniest drop of water then topping up with neat blackcurrant juice. you can also put it in a syringe which squirts to the back of the mouth a bit easier than drinking it.

35mg is pretty high. they do it by weight. offhand I think the standard protocol is to start at 60mg/metre squared for about 4 weeks for the first occasion, then every other day, then a reduced dose. ds1 has been on 35mg when he was 3 years old so possibly if your ds is 7, it is not the highest dose possible. hopefully he will start to respond to the pred quickly. what colour are his urine strips at the moment?

I did wonder about disolving it and using squash!
We haven't been given any urine strips yet, we have to take a sample with us on Thursday when we go to clinic so they will check it then.
They had said about him being on it for 4 weeks at a time only but I don't think they are reall expecting him to respond to it anyway but they are trying it now while they wait for full results.

no reason to think he won't respond to the pred, as yet anyway. there are definitely people on kidcomm whose children with fsgs respond to steroids. I have fingers and toes crossed for you.

try the squash thing tomorrow - hope he doesn't find it more disgusting lol. i used to have to chase ds1 round the house to get him to take it.

Thanks,
I'm off to bed now but will put a message on Kidcomm tomorrow!

How did you know he was leaking protein Did he have swelling?

The protein was found when we took him to the gp with tummy pains (which turned out to be constipation) but the gp wanted to do a urine test to check for infection, a repeat sample was checked a couple of weeks later and she sent the sample to be analysed. It came back with a very high amount of protein and so she refered us on to the hospital

sorry, he has shown no signs of swelling at all either

Oh ok I have had renal problems and a transplant eventually but had a rare condition and most patients who had leaky kidneys recovered with steroids I was very swollen ankles and face and steroids didn't help but were miraculous in others i knew at the clinic Good luck xx