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Original poster

UTI's and kidney damage

19 replies

emben12 · 13/06/2011 14:20

Hi
When my daughter was 5 months old she had a urinary tract infection. She then had a couple more before being put on constant antibiotics to keep them at bay. She had to have an ultrasound and then DMSA scan. We found out today that she has moderate damage to her left kidney as the original infection wasn't caught for a few days. Her right kidney is fine but is doing most of the work.

We are obviously devastated but I can't seem to find any information on a prognosis for her. I know that people can live with one kidney but I would like to understand whether she could encounter difficulties as she continues to grow. She is one this week.
If anyone has any information or experience with this situation I would really appreciate it. There is mountains of information advising people on how to catch these infections early in order to prevent kidney damage. But very little on what you can do once damage has occurred.
Thanks very much.

OP posts:

ThisIsANiceCage · 13/06/2011 14:40

Was discussing exactly this with a middle aged friend who was in a similar situation to your daughter 40 years ago (obstruction needing emergency surgery, causing dramatic scar). Has never had any subsequent problems whatever.

Original poster

emben12 · 13/06/2011 18:48

Thanks so much for posting that. It is the first positive thing I have heard. There seems to be no information anywhere.

OP posts:

slovenlydotcom · 13/06/2011 18:53

I have scarred kidneys as does my dd who is 9. Like your dd she had a uti very young and they discovered reflux: she was on antibiotics until she was 4.

I have duplex kidney and this was discovered at 11. I have always been prone to kidney infections and as an adult a couple have been nasty. Other than that I am fine - am now 46 and in good health.

When I was diagnosed my mum was told 25% of population have something similar but most never know it.

Original poster

emben12 · 13/06/2011 21:08

Thank you very much for your post. I have been beside myself today so to hear that this could be more common than I realise is quite heartening. My daughter also has reflux and now will be on antibiotics until at least she is toilet trained. I'm hoping that will keep it at bay as i'm worried about further damage.

Thanks so much again for sharing your experience. It means a lot.

OP posts:

EldritchCleavage · 13/06/2011 21:15

A relative of mine had this. The damaged kidney subsequently had to be removed. Other than that she has had few or no problems. She is now the mother of two children of her own.

I feel for you- we went through all this with DS, including DMSA, tube up the penis etc when he was 4 months. It was awful but need not mean there will be long-term issues.

DelGirl · 13/06/2011 21:24

My dd who is 6 had her first uti at 10 months and then was on antii b's for about 2/3 years. afaik, she doesn't have any damage that they are aware of. However she has to have yearly check ups and I have been told that she will have to have her blood pressure monitored indefinitely as any scarring can/may cause high blood pressure. hth a little

Northernlurker · 13/06/2011 22:41

You can be absolutely healthy and fine with 50% kidney function and it sounds like she has considerably more than that. Lots of people have a reduction in function with no ill effects at all. It's important to know about it so she can take good care of her kidneys but there is every chance she will never think twice about this issue. I think because you have two kidneys we tend to think that you need two iyswim but that isn't the case.

Original poster

emben12 · 14/06/2011 09:10

Thank you all for your messages. I've been in bits about this so is just great to hear that maybe its not as bad as i initially thought. I really appreciate you all taking the time to drop me a line.

OP posts:

slovenlydotcom · 14/06/2011 17:26

I'm glad you feel a bit better - it is so horrible when things like this happen to our children.

My friend's mum had an operation in her 60's and was asked afterwards when she had a kidney removed, she hadn't and had lived her life with one kidney and no knowledge of the fact!

The consultant told me reflux was very common.

Bunbaker · 14/06/2011 17:51

My daughter had two UTIs within a week at age one. She was diagnosed with bladder reflux as well and was on a low dose of antibiotics until she was four. Fortunately her infections were dealt with before any damage could occur, but it has made me very vigilant. Whenever she gets an unexplained high temperature I whisk her off to the GP with a urine sample just in case.

I think most people underestimate how dangerous UTIs can be and I have had silly comments like "I don't feel happy giving my child antibiotics all the time". My response is that it is better than the alternative. DD had one breakthrough infection at 15 months so they changed her antibiotics and never had any problems after that. Also, reflux is something that they can grow out of.

DD is now 10 and has been UTI free since 15 months, but I am still vigilant.

slovenlydotcom · 14/06/2011 19:00

I totally agree Bunbaker, I was not happy with the idea of dd having antibiotics long term, but when the consultant explained that the kidney damage could lead to problems with her blood pressure then there was no 'choice' she had them- we too did the trip with a bottle with every temperature

dd has had a few in the last year, but strangely there was no temperature, just discomfort, but after the initial infection at 9 months she had nothing until she was 9

Original poster

emben12 · 14/06/2011 19:59

I am now exactly the same. Since the first occurrence I have armed myself with a urine sample and gone straight to the GP at the first sign of an unexplained fever. I now know that this prevented further damage. However, I am so angry that the GP didn't spot the first one. If UTIs are very common and can also cause sever kidney damage, then why on earth did they not check this straight away. My daughter's kidney damage could have been completely avoided. Now we have to live with this and hope it doesn't get any worse. It will take a long time for me to be able to let that go.

OP posts:

EldritchCleavage · 15/06/2011 14:24

Oh, Bunbaker, I had all that nonsense from my 'woo' SIL. DH was furious with her.
DS was so ill initially they suspected meningitis and gave him a lumbar puncture. People who had NO IDEA what we had been through gave us all that 'Oh, I don't really like the kids to take antibiotics'.

Well no, but if the alternative is kidney damage, daily trimethoprim starts to look like a good idea.

Sonia1267 · 04/02/2023 12:43

Hi any updates as to what happened and is your daughter still on antibiotics? my daughter is 18months old and has had uti since she was 6 months old and has been on antibiotics since then.

RampantIvy · 04/02/2023 12:54

I used to be Bunbaker. DD is now 22, and has been UTI free ever since.

Sonia1267 · 05/02/2023 03:52

Sorry what do you mean by bunbaker

RampantIvy · 05/02/2023 08:20

I posted upthread under my old user name of bunbaker many years ago.

Sonia1267 · 05/02/2023 11:47

Wow that’s really good! May I know what you did different, what helped her? And how long was she on antibiotics? Thanks.

RampantIvy · 05/02/2023 12:35

She was on antibiotics until she was four. I didn't "do" anything other than make sure she took them.

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