DD's kidney scan showed one wasnt working, anyone else experienced this?

[wolfcubEm83]

RPD diagnosed at 20 week scan and confirmed at 32 week scan. We were told she would be on antibiotics from birth and under consultant care.

When she was born a nurse came to tell us that the paed consultant had seen dd's notes and didnt think antibiotics were necessary and that she would be called for a scan before 6 weeks.

Had 6 week scan and sonographer told us that it isnt RPD, that in fact one of her kidneys wasnt doing 'a great deal' and that the other kidney had grown large to compensate for this. He added that apparently it is very common and not a problem so we shouldnt worry.

DD is our first child and we are trying not to worry but obviously it does concern us a bit. I am being extra careful with nappy hygeine to try to prevent possible water infections (as she isnt on any medication) and making sure she gets plenty of fluids, she is formula fed (BF for 5 weeks but it didnt work for us in the end) and is a great sleeper, generally a very happy and content baby.

We are waiting for a referral to the xray department for further tests, im assuming nuclear medicine scans to check her kidney function, i just wondered if anyone else had had a similar experience and could shed a bit of light as to what to expect as we have no idea. We havent spoken to anyone else but the sonographer about it so we dont know if she will have to have an operation to remove the non-functioning kidney (if thats the case) or whether it is just left there. I know people live perfectly healthy lives with one kidney but i do worry.

Thanks and sorry its a long post x

Hi

Not totally the same but I was told at 20 week scan my DD2's left kidney didn't seem to be working too well. Cue hysteria and worry. She had a scan at 5 days and was on antib's for 18 months. She also had a nucleur scan and it revealed she had 3/5 of a kidney that didn't really work and just held stagnant urine. She was hospitalised twice for IV antib's until she finally had surgery at 18 months old.

Her other kidney had a problem also but this was rectified during surgery and her 2/5 left kidney has now compensated for the part that is missing.

I was obsessive regarding hygiene but over time did go with the flow otherwise I would have gone mad!!

My biggest piece of advice is to not settle for a sonographer as althought they are excellent at their jobs they cannot provide the answers you will want. We had a consultant paediatric radiologist (NHS) scanning every time who answered our initial questions every time she was scanned which was great. We had a leading UK consultant nephrologist caring for her and eventually operating on her. I trusted him and his team and made it clear we wanted informing about everything as 1 consultant I met along the way said I wouldn't possibly understand so there was no point him explaining anything to us (he was not to be seen again).

My DD2 is totally fab and very proud of her history and scar and even though we don't prevent her from doing anything she knows that if she falls on her side from a height she must tell someone straight away so we can get her checked (this has happened at school) but I refuse to wrap her in cotton wool!!

As I said not exactly the same but a happy ending.

Thank you for responding DITDOT, its great to hear that your DD is doing so well and has such a positive attitude. I hope my LO is the same.
Im waiting for the consultants secretary to get back to me at the moment and im not going to go off the phone until i get an appointment.

My DSis had this diagnosed at 7 years of age, she had a year on antibiotics. She is now a very healthy 38 year old with 3 robust children - hope this helps you not to worry.

Yes Lizcat, this definately helps me not to worry!! Its hard to believe that my DD will one day be 38

I am wondering, how on earth would i know if she had a water infection? Ive had one and it was stinging wee and back pain which she obviously cant tell me about. I assume she would just be crying and maybe have a temperature?

Your consultant is right, it is indeed common.

At about age 47, my mother had a full body CAT scan following a terrible road accident.
They observed one of her kidneys was present and healthy but not plumbed in, it did not do anything for her & never had.
"Does it matter?" she asked.
And told that if she had managed that long without even knowing about it she was indeed fine. The examiner even quipped that she could be comforted to know that she had a perfectly functional spare.

We subsequently discovered minor anatomical variations in many other relatives, seems to be a family thing!

When my DD2 was in nappies she had funny greenish colour discharge and the smell of her nappies was 'different'. She had a very high temperature, sleepy and totally off her milk and food.
When she was potty trained it was still the temperature etc but in her potty/toilet bowl was debris like little bits of mucus. One time her urine was like pea soup.
When I detected an infection I went to GP who needed a urine sample which from a baby was a tricky task (I became an expert!!) and required using special bags or hovering for hours over a foil dish!! I kept collection bags at home so I could get a sample before going to GP. I still keep sample jars now just in case.