urinary reflux - advice please!

[cakehole]

my (just) 2yo daughter has just been diagnosed with urinary reflux after a 2nd ultrasound and 3 utis. She did not have utis before she was one so seems she was not born with it, more scans to come in a few months anyway to see what is going on. She is only now on daily antibiotics (and today another sample been sent off for uti testing....) She is average weight/height. I know she may now not get any more utis and may grow out of the reflux - but reading about kidney scarring though is so scary - the utis were all severe (the first one she had high temp for over a week and took a lot of nagging by me to docs to even test her for uti, the last one the docs thought was scarlet fever until vomiting started). i cannot bear the idea she may have lifelong problems /checks to me not being aware enough/stroppy enough with docs. (the first scan was also inconclusive due to the dr being just awful and so she screamed throughout - and now I wish I had demanded another one then rather than wait 6 months as advised).
Has anyone had similar experiences? and shere scarring has been shown what happens then?

that should say 'where scarring has been shown'! sorry for my typing. My mum has also offered to pay for private care but I am sure she is getting good care and things cannot move any faster (we have a children's hospital) - however a second opinion is appealing as the consultant is always unprepared for our appointments, asks me to tell him when/what etc. I love the NHS but feeling scared I have been too respectful and keen not to question....

I've never heard of urinary reflux but I'm guessing does the urine (that should be passed out) go back up into her kidneys so taking the bacteria with it ?

You have to wait months unfortunately for these appointments. My DCs were referred for bladder and kidney scans and a Paed appointment.I can't remember how long it took, but they were not on antibiotics, your DD sounds like a priority case.

BTW our Paed consultant and the sonographer who scanned them were lovely ,very professional and put DCs at ease (and mum!), answered questions and explained everything.(Though I did have to wait 2 hours to see consultant because the arsey nurse thought we'd been seen but didn't question why I was sitting in a very small waiting room as she walked past me 20 times )

You shouldn't have to deal with an awful doctor on top of everything else.
I'd ask for another appointment with another doctor.And not to wait 6 months.

And be assertive (but polite) it doesn't offend to ask questions. Write your questions out before, write the answers down.
Good Luck

ah thank you (reflux guessed correctly). good advice, especially the writing down. I think I need to nurture more of a relationship with a specific GP too as I always see a different one and some take it all much more seriously than others. I hope all turned out well for your DCs.

My DD was born with Kidney reflux amongst other Kidney problems. She was on antibiotics from 5 days old to prevent infections as if she scarred her good kidney (other one was dodgy!) then she could have been in trouble. In the end she had de-flux surgery to rectify the situation but this was only as it showed no sign of clearning up. She is now 5 and absolutely fine and (cross fingers) UTI free. I know some people don't like the idea of taking anti-biotics regularly but needs must sometimes.
Docs didn't give much info and only through my persistance did I get the answers. In the end I changed consultants and got a fab one who performed the surgery.
Don't panic as my DD has a host of kidney issues and reflux was only 1 of them.
We are on annual scans now. In the north BTW.

My DD has this, she was diagnosed with grade 4 at 3 months old (15 months now) on trimethorpim daily and thankfully hasn't had any more flare ups, we have had a few scans (catheter and nuclear medicine ones) which have shown whilst it is getting no worse there is some scarring on her kidney and we just have to wait and see what happens as we go. We have six monthly appts at the hopsital and the consultant has said that DD will have to come off of the anti b when she is out of nappies and they will monitor what happens, not looking forward to that day!

On another note DD was under care of hopsital for removal of a skin tag and the consultant we were dealing with was aware of DD's kidney relux, he told us his daughter has had it since she was born also and she has suffered with UTIs but she is a happy healthy 19 year old now and hasn't suffered any long term issues.

My DD had this problem - she was diagnosed at about 1 yr after many UTIs and went on daily anti - biotics which made no difference.She had an operation at the age of 2 to repair a defective valve in her bladder and has been prefectly fine ever since. We live in France so I'm not sure of the proceedure in the UK but it was all very straightforward here .Good luck with your dd.

MY DD's bf has this, unfortunately she wasn't diagnosed until she was 4, so there was damaged to her kidneys and one doesn't work at all now. However she is a teenager now and is fine but obviously has to look after her good kidney.

thanks everyone, glad your LOs doing well. I am sure in time I will just be glad she's well and monitored, and forget current feeling that the UTIs she's had should have been caught sooner. I am going to be far more pushy with questions! What seems to be odd in our case is that she was totally well until after being 1, so seems not born with it (although she was a stressed baby - colicky!). One more thing, I read somewhere that siblings likely to have it too even if no symptons/UTIs.....is that anyone's experience?

I have an older DD as well as my younger DD with the kidney probs and she does not suffer from UTI's at all. Was told by my consultant there was nothing I had done or had passed on.

Hello, my son was diagnosed with urinary reflux (ie his wee was going back into his kidney and causing infection). It wasn't diagnosed straight away and after a couple of infections, he was put on daily Trimethoprim. He has since had scans on his kidneys and it was found that one was severely damaged and had not grown properly (he was 7 months at the time). He is now 2 and still on the meds every day but apart from that he is a happy and healthy little boy. He is having more tests when he is 3 to see whether he still has reflux. The worse case scenario seems to be that he may have to have the damaged kidney removed at some point if it causes high blood pressure in later life. I panicked to begin with but so many people live a totally normal life with just one kidney. Please try not to worry (easier said than done I know). We recently took part in the kidney research london bridges walk and it was such an inspiration to see so many positive stories about people with all sorts of Kidney conditions. Best of luck for the future

thanks to everyone, you have really helped. the letter I have now had does not mention reflux (confusingly!) but does mention severe dilation and possible renal scarring. too much technical speak! I will see GP next week and ask lots of questions! RubyCharlie hope your boy's news is good - the waiting is a tough one isn't it.