Unilateral Renal Agenesis

[gertrudemortimer]

My ds 7 has recently had an US scan which showed he is missing his left kidney. I am awaiting a letter for the initial consultation which they said will be within two weeks.

I'm interested to know what I should expect to happen now? Do I need to push for anything or will they be thorough in checking the remaining kidneys health?

I'd like my ds to have his kidney function checked, he's had a blocked urethra for at least two years which caused urine retention and very poor urine flow. He was born with other defects in the urinary tract and the surgeries for them caused the blockage in his urethra, during the cystoscopy for the blockage is when they identified the kidney issue.

I know I should probably just wait and see what happens but I'm very concerned and would like to hear what the process was for other children/adults when it was flagged up.

I'm struggling to get my head around how he'd been far enough down the treatment path to to have had previous cystoscopy without having had a previous USS?

@nocoolnamesleft I'm not sure what you mean.

Timeline of events is
two surgeries on penis as a toddler/preschooler, post surgery follow up 12 months later with bladder scan and uroflow showed urine retention and poor stream.
He was referred for a cystoscopy (2 year wait) as they suspected retention was due to a blockage and during the cystoscopy when they fixed the blockage they also checked his bladder and kidneys but couldn't find the left kidney. They referred to renal and an US scan which is where we are now.

Just that USS is usually one of the first tests with urinary problems in children, not one of the last. Given the history, I would think he'd be likely to merit further imaging to check out kidney function. If literally only looking to check no signs of scarring on his existent kidney that would probably be a DMSA, but I'd almost be tempted to do a MAG3 (at 7 he should be able to wee on demand) to also look at flow down from the kidney, and make sure there's no reflux of urine back up to it from the bladder. Both scans involve injecting a radioactive isotope that is taken up by the kidneys, but the second one can also look at it being excreted from the kidneys down to the bladder.

@nocoolnamesleft thank you so much! That's exactly the kind of thing I needed to know. I think the reason they didn't perform an US prior to this is because they didn't know he had a kidney issue - they thought his only problems were related to the urethra and that was causing the urine flow problems.

One of my DC has found out recently that he only has one kidney. We are all shocked. He has been having incontinence issues (aged 13) so further investigation was arranged, USS appointment was issued. We are awaiting referral to urology, awaiting first appointment coming through the post to look at function of his remaining kidney.

How is your DS OP?

Edited due to spelling error.

@Vettrianofan I'm very sorry you're going through this too, it's such a shock isn't it.

Has your ds had any other tests done relating to urology? Do they say the missing kidney could be causing the incontinence? Sorry, I'm clueless when it comes to kidneys.
I wonder if they'll do a uroflow, it measures the urine stream and they do a bladder scan to check for urine retention. It identifies if there are any potential blockages too.

Everything is very slow on our end, we had urology appt relating to the kidney in January and then getting urology to send a letter asking gp for a blood test and regular bp took from January - today.

I had to push with urology in January for the blood test, they were happy to leave him because he had full bloods done in 2020. I asked the urologist what his kidney function results were back in 2020 so he brought it up on his computer and the creatinine was low (clearly he never even checked the 4 year old blood results before coming to the conclusion it wasn't necessary) anyway he said yes to the blood test if it put my mind at ease. I appreciate his opinion is that it wasn't necessary but I really do need concrete evidence his kidney is working as it should be. Ds has been let down so many times by the urology dept and I don't trust their personal opinions anymore.

DS has only had to do a diary to check urine output due to incontinence issues. He hasn't had any other tests done yet. This was by complete chance finding out about the kidney situation. Hopefully we get him reviewed very soon by urology. Like yourself, I am anxious to find out about his remaining functioning kidney and what state it is in.

So glad your doctor agreed to do the blood test for your DS. Keep strong, we are both in the same boat here as parents. So glad I found your post btw! Will post back once I know more😊

The USS staff said that incontinence could be completely unrelated to the absent kidney. We have to get more tests done to try and get to the bottom of it🤞

@Vettrianofan yes please keep me updated on how you get on I hope it all goes smoothly (and quickly!) for you and your son.

Paediatric Consultant just phoned us yesterday to let us know that DS will be getting a DMSA scan and to expect the letter for the appointment in due course. She apologised for taking so long to get back in touch. Think we have been waiting three months since he had the USS. Anyway, just an update in case it helps another parent in similar circumstances.

She's not sure if the continence issues are related to absent kidney. That will get discussed with urology.