VUR (reflux)

[MummyTo3Beauts]

Hi all,

Just wondering if anyone's child has/had VUR and if they fancied chatting about it xx

Hi, bit late replying, my DD had VUR, how how can I help?

Dc3 had/has vur grade 4 in his right kidney and grade 3 in his left . It was discovered when he was 4 months old, he was admitted to hospital very unwell with suspected meningitis, turned out to be a raging urine infection due to reflux.

He is 8 now and had a small op aged 13 months to narrow the openings of his ureters, daily antibs until he was around 4 and then discharged with the advice that he will eventually grow out of it.

Have you a wee one with vur OP?

Thanks for replying both. Ye my daughter has. We found out at 2 months when she was admitted with sepsis from a uti. No one believed me there was something wrong.

She has grade 4/5 and her right kidney is very scarred. She's had 2 sting procedures which fixed her left one.

Her latest procedure was the beginning of October and since then she's has had 3 utis which have grown pseudomonas.

She has been on a variety of prophylactic antibiotics. I just don't know when it will all end xx

She's now 4 and a half years xx

My DD has left sided cystic dysplastic kidney with VUR. Normal right kidney thankfully. Diagnosed before birth. She was on prophylactic antibiotics till age 5, had several UTI's and then a STING age 5 which has stopped them. No further problems since, touch wood. She's now a happy healthy 12 year old. It was all horrible at the time, you have my sympathy-but there is light at the end of the tunnel.
My advice would be, make sure she drinks plenty, always do a urine sample if in doubt and make sure the result gets reported quickly and always sent to the lab and not just dipped by the gp surgery. And chase for the result- urine results are normally back from the lab in 24 hours-not the 'few days' gp surgeries seem to tell patients. My DD's urologist stressed to me that it is so important that children's UTIs are treated early and aggressively to protect their kidneys-GPs just don't seem to realise.

Just to add, I probably didn't make it clear, we were backwards and forwards all the time for those 5 years for urology appointments, paediatrician appointments, DMSA and MAG 3 Scans every 6 months and a particularly unpleasant MCUG scan when she was 6 months old . Plus several ultrasounds and a couple of blood tests. Happy days

@InSpaceNooneCanHearYouScream

We've done 2 of DMSA, MAG and MCUG. And so many ultrasounds. We've stayed in alderhay twice since October. I just don't know where they will go next. Another scan or surgery.

I have my own urine sticks to test and open access to our local Childrend ward. They never seem to understand the importance of getting her treated quickly.

I hate the waiting game. I'm glad your daughter is better now it's not nice Togo through xx

Another sting I meant xx

That sounds so hard @MummyTo3Beauts, we were lucky in that the sting procedure was reasonably successful. It didn't stop the reflux completely but ds hasn't had a UTI since. I believe he has 25% function in his right kidney and the left has grown larger to compensate!

I do remember all the scans and the worry and the radioactive injection :( and trying to keep a toddler perfectly still for a dmsa scan.

I'm sorry you're still going through it, thankfully by 5 ds was discharged and we've not had a problem since.

Fingers crossed for your dd that there is some improvement over the next year 🤞