Advice needed on kidney reflux

[Haribosmum]

My 4m son has a dilated left kidney and his consultant refered him for some tests at the childrens hospital to see if he had kidney reflux or something else. He has been on antibiotics since birth so thankfully we had avoided any urinary tract infections so far. However the consultant at the childrens hospital has refused to do these tests saying they were not justified.

My sons cousin who is 1 month older than him recently had these tests and the tests revealed catagory 5 kidney reflux (which I beleive is they wort?). Apparantly his mum had to argue to get the tests done because they did not think they were justified for him as well.

I have a consultant appointment in just over a week. Do you think I should battle to get these tests done just in case? Do you think they will agree now because of his cousins diagnosis?

It is amazing how similar they are in developmental steps so now I'm worried about him. What do you think?

Anyone? Please?

Of course they should test! I would demand them if I were you. My ds had dilated kidneys in utero and he was scanned after he was born twice and both times they had gone back to normal. If they hadn't he would have been put on low dose antibiotics and would have had the reflux test. You must ask them to do these and tell them about your son's cousin.

This is really weird. Just got an appointment for the hospital in the post! Maybe they are mind readers!! But now I'm worried about the test (the bladder dye test). Oh how us mums and dads worry about evey little thing!

I had reflux as a child, not sure what grade but was checked until 15 and last test showed I'd out grown it so probably quite mild. I however had added problem of having a duplex kidney with two ureters both of which had the reflux. I was on prophelactic antibiotics from 2 - 12 and had countless urine/kidney infections.
Don't really have any advice but just wanted to say good luck for test.
Apparently there's a tendency to run in families so I agree you should mention cousin.

Thanks. It's wierd that these babys are the first two family members to ever suffer from this. Don't know my family history because I'm adopted but seeing as my bubs cousins mum is my husbands sister I think any genetic link has come from his side. Got the test on 4th June but I'll still mention his cousin to the consultant at our routine appointment next week.

My dd has this. I didn't know there were different grades of it. She had a urine infection, that's how it was picked up and there was never any question that she wouldn't have the tests. Not that I would have known any different iykwim. She's now on long term ab's and seen every 6/12 months I think until she grows out of it hopefully. good luck and try not to worry

I didn't know there were different grades either but probably because we're at the earlier stages of diagnosis. Plus my sister-in-law is a nurse so he has a medical advantage over me!

my ds, 8 months, has just had a pyeloplasty at the evelina children's hospital last week. is that where you went? and did you see mr mushtak or dr more?
my ds had the bladder dye test and although the bit when they put the catheter in is uncomfortable for the baby, the rest is ok.
although these things run in the family, in the past a lot of people just went undiagnosed. we've been told there are loads of people with not very good kidneys, but good enough to get them through from day to day. good luck

I think, well I know I had lots of problems as a child and I've had kidney stones twice now. It explains quite a bit actually. I'm grateful it was detected early for our dc's. It will hopefully prevent any long term damage.

Grannycrackers - No I'm in the North West of England so we are going to Pendlebury childrens hospital. And my sister-in-law is in New Zealand! Thanks for everyones good wishes. I'm sure he will be fine, even if it come to the worst case senario and he had to have an operation...