Any parents of babies with VUR/Kidney Reflux?

[xarlenex]

We've known for a few months now that our baby has severe Kidney reflux on both sides, just looking for any other parents with babies in the same situation?

 

[ClairAye]

Hello, my son had bilateral VUR, it was found at 4 weeks old and caused by a blockage (PUV), he also had bilateral Hydrenophrosis. He's 6 now and his VUR had resolved by 4 years old and as of last year he has two healthy looking kidneys (minus scarring which is lifelong but causes no issues). Have you looked for Facebook groups? They've been a life-saver for me over the years!

 

[xarlenex]

Oh I never thought of looking for Facebook groups! Glad to hear your son's has resolved. My youngest is 5 months old today and we've had 3 hospital admissions, 2 lumbar punctures (due to high fevers) countless bloods and another 2 treatment courses of antibiotics. She was on trimethoprin for a period of time but after 2 infections she was moved to Nitrofurantoin, what preventative was your son on? We've only had the VCUG, so we know it's grade 4 on both sides. She is having the DMSA early, anytime in the next few weeks we were told to expect it, to establish how well her kidneys are functioning etc then they will decide whether or not it'll be surgery. I can't help but feel it will be because she's had so many reoccurring infections, she was born on the 75th percentile and is currently hovering above the 9th.

I'll have a nosey for some groups now thanks x

 

[ClairAye]

Aw poor wee thing! I'm thankful my son only had one UTI but it led to sepsis at 4 weeks old so we've been there. ♡ My son was on Trimethoprim and it worked thankfully, he came off it after 4 years when a urodynamics (bladder test) showed no reflux anymore. My son also had the VCUG whilst in for sepsis then a MAG3 at 3 months old but despite all the issues his kidneys had going on he was 46%-54%. Good luck for the DMSA! My son had surgery but because his reflux was caused by a clear blockage in the urethra surgery was fairly non-invasive and through the urethra. I was in one VUR group on Facebook but it wasn't too busy. Does she have Hydronephrosis? There is Hyrdonephrosis in Children and Caregivers to Children with Hydronephrosis which are fairly active groups too.

 

[xarlenex]

No our paediatrician said her Kidneys were of normal size so that was reassuring but we don't actually see the Kidney specialist until next week so we'll know more then. She has duplex ureters which they believe is the likely cause of the reflux.

It's been hell to be honest, all but the first urine samples we've given actually haven't shown enough bacteria growth to be determined an infection which has led to being sent packing by many drs who didn't listen, eventually the fevers have set in and it's been 3-5 days IV antibiotics. We eventually saw some drs who said the water is a bit muddier so to speak when kids are already on an antibiotics, they won't always get back positive cultures but could still have UTIs. Which has been the case in 3 out of 4 of her infections. The first and only symptom for a few weeks is reduced feeds, the main issue we've had is that she is such a HAPPY baby! Genuinely always got a smile on her face, except when she had her highest of fevers, and most drs haventh been able to see past the fact she's been smiling at them to believe she's been unwell. But when I've got a baby who is feeding less than a newborn all of a sudden for no other reason I know something isn't right! Sure as anything we up her oral antibiotic and within 24-48 hours her feeds pick up. It's really been our luck with the drs we see whether or not they are willing to thibt outside the box.