Chronic Kidney Disease

[Danemom24]

My 16 year old son had bloodwork in May 2024 I just found out in January 😡 that his GFR at that point was 72%.. more bloodwork was done and findings are now 55% as of January 15th, they started him on Lisinopril and goes back in May. We found out accidently that his older brother (17) has ADPKD 2 which prompted my 16 year old sons testing, my older son is currently still at 100%. Im obviously new to it all and dont know where to start or what to do to help so any advice at all i would greatly appreciate. From what ive read he should be seeing a Dietician? He did have protein in Urine in last visit and his GI had him on Ensure Protein drinks 4 times a day as we were unaware of this so I have since stopped those and she also switched his medication for his GI issues.

[BearMama0321]

Hi there!

First, I’m so sorry you’re going through this. It’s hard enough navigating CKD, let alone with a lack of insight/communication.

Are you taking him to a pediatric nephrologist? That type of decline plus the family history seems like it would warrant a quicker follow up.

In your shoes I’d be demanding a consult where I could ask all the following questions:

What is the cause of his CKD? How do you know?

What is his treatment protocol? When will you re-check labs? Based on what?

What dietary changes does he need to make? What are his daily fluid goals? Does he have activity restrictions?

What is his prognosis? How will you monitor his condition?

Have you treated other kids with his condition? How many?

How will you coordinate with his other specialists — like GI? (My son’s team of specialists meets twice a year (used to be quarterly but he’s been pretty stable, knock on wood) to discuss his labs/imaging & shift treatment plan if needed). Everyone needs to be aware & on the same page.

Why was there such a gap between the bloodwork & us being notified of his eGFR?

And any other questions you have.

For what it’s worth, in adults CKD = 2 sequential eGFRs below 60, but this is why a pediatric nephrologist matters. In pediatrics the threshold for suspicion is much lower. Similar thing happened to my son. Emergency room doctors ignored his creatinine level because it was “in range” — for 0-18 year olds. The true range for his age at the time (13 months old) was much lower; had a pediatric nephrologist seen his labs, he could have been treated sooner & potentially avoided the scarring of his right kidney (he had an undiagnosed UTI — they never checked his urine — and urine reflux; the infection reached & destroyed his kidney. He wasn’t diagnosed until 7 months later — when his right kidney was completely scarred. He’s 5 now and doing well, though is expected to eventually need a transplant; his left kidney also has a small amount of damage.

Anyway; I’m sorry you’re going through this — but you will get through it. Make sure you’re taking care of you, too. There was definitely a long period after my son’s diagnosis where I was numb/depressed & put my own needs last — which didn’t help anything or anyone.

Sending the very best; go chase down his doctor for answers!!!

[Danemom24 in reply to BearMama0321]

I am so sorry to hear about your Son 😔 it definitely takes a toll on everyone we have all been on overdrive in our minds and trying to figure out what our next steps are.

He goes to USF Health Pediatric Nephrology and the one doctor he was seeing did genetic testing on my older son which came back as the ADPKD Type 2 which is a genetic form and type 2 is the not recessive one so they didnt do it on my other son they just assumed it was the same as his brother. But when we went on the 15th of January it was a new Lady Dr and she was NOT happy we were not informed of it so she called me personally and gave me her direct line so i dont have to deal with the other dr anymore. I plan on calling her first thing tomorrow as he is having symptoms ( now that we know and know it can be kidney related ). They draw blood and urine everytime we go in and send it out themselves so I have already requested ALL his medical files be sent to me as well so I can see them for myself. And ive started a medical journal to document all the phone calls i make as well as his symptoms and such. I just feel like as Doctors they should be doing more than they are 😓 trying to search for New Nephrologist that takes our insurance.

Thank you for the Advice and I am definitely making a list of all my questions tonight to be asking her tomorrow!

[BearMama0321 in reply to Danemom24]

You got this, mama! I totally agree; it is ridiculous how much we need to become experts & advocate. You’re on your way, though; sounds like this new doctor is a better fit.

Please keep us all posted; rooting for all of you! ❤️

[drmind]

My goodness, sorry you're going thru this. Sounds as if you need a second opinion ASAP. Lots of explanations are needed. The wait between labs seem to be way too long. BeatMonna gave excellent advice