Advice needed please!

[Mum_blue_2]

Hi everyone I’m new to this so beginning of last year my 8 yr old son was diagnosed with ckd stage 3 he was only under the hospital for bed wetting so this come as a big shock after further tests at the end of last year doctors discovered my son needed to learn to self catherise to help with stop the pressure in his bladder sending urine up to his kidneys. He really been going through it lately and now we are having trouble getting his creatinine levels down can anyone help with any advise on what I can be doing at home to help with this? Would be nice to talk to a parent going through the same situation me and my son are in

Thanks in advance

[BearMama0321]

Hi! Not in your exact shoes but my 22-month old son was diagnosed with stage 3 CKD and unilateral VUR back in November of 2020. His right kidney is almost completely atrophied. Thankfully, so far, his left kidney appears to be healthy.

Does your son have VUR (urine reflux) on both sides? Have they done a mag-3 or other nuclear medicine study to determine relative function in both kidneys? How have his creatinine levels been? Are you getting care from a nephrologist and urologist? Any discussion of surgery to help with what I assume is VUR (urinary reflux)?

No advice on the self-cathing but I absolutely wanted to lend my support and send virtual hugs to you and your son. That’s a lot for anyone, let alone such a little guy. And as a mom, my heart goes out to you, too.

[Mum_blue_2 in reply to BearMama0321]

Thank you for ur reply Awww bless ur little one it’s so hard isn’t it

Been a lot to get my head around that’s for sure

I’m sure ur the same

It’s both kidneys for my boy and unfortunately because he has such a high pressure when he urinates naturally they can’t operate on him using a catheter is his only option he’s been doing amazing though and applies a catheter and removers it every time he needs to go

It’s the creatinine level that is an issue at the moment other then drinking a lot what else can I do to help get the level down his level is at 115 at the moment we have to go back to the hospital in 2 weeks for more bloods so I’m trying all I can to make the level go down

Any advice would be great

[BearMama0321 in reply to Mum_blue_2]

No advice from me but definitely keep us posted. I’m sure someone else will pop in; this community is great!

Definitely ask your urologist about surgery; not to remove the kidneys but they can often either move the ureters or create a “flap” to prevent or lessen the degree of the urinary reflux. It’s the urine backing up to the kidneys that creates that pressure. Sounds like he needs some time to stabilize a bit first, though. I’m totally not an MD or expert of any kind; just been absorbing as much info as I can.

Best of luck! Your son is a trooper; so are you!