ESRD child

[Mom_of_k]

My son is 21 months old and 3 weeks ago we got rushed to the hospital to find out he has ESRD and puv..Has an other parents children been diagnosed with esrd with no symptoms from pregnancy, birth or as an infant until all of the sudden? Also any good transplant stories please tell!

[Lifealysis]

Did they tell you how he has ESRD?

[Mom_of_k in reply to Lifealysis]

He had un diagnosed puv which backed him up and we didn’t know by the time he showed physical symptoms it was due to critical electrolytes and his kidneys took so much damage over the 3 weeks of dialysis his bun and creatinine drop then rise back up showing he has irreversible damage and that damage is diagnosed as esrd

[Quamel_Mom]

Hi there, my son had his transplant last summer . My son was diagnosed with CKD two months after his 2 nd birthday. After waking up from the anesthesia my son look at me and said “Mommy I feel better “ . It’s truly amazing how he felt better instantly. And that was the first time I ever heard him speak clearly. Before surgery he had some delays, but now is meeting those milestone . Ask the nephrologist all the questions that you can . I wrote down any questions that popped in my so when I went in for a clinic visit so that I would not forget to ask.My son’s journey is a bit different he was having issues after birth that cleared but once he started to grow then the problems started to arise again . Lost of appetite and energy my son was experiencing also vomiting. Since transplant my son is doing well , his appetite and energy and is now able to have a normal life. I will keep your family and my prayers.

[Mom_of_k in reply to Quamel_Mom]

I can only imagine just with a few weeks of dialysis my sons whole personality has completely changed in a positive way. Thank you for the reply and congratulations for your son

[Quamel_Mom in reply to Mom_of_k]

I am so glad to that!!! Thank you . I will be keeping your son , you and family in my prayers. Please keep us posted and let know how he is doing.

[BearMama0321]

Hi there,

I'm so sorry to hear about your son and while I don't have experience with ESRD, my almost-20-month-old has CKD due to an atrophic right kidney that was discovered totally incidentally on an ultrasound when being worked up for recurring fevers. We're still in the process of diagnostic tests, etc. Not remotely trying to compare our two situations but just sharing for background. There were no alarming "symptoms" the suggested kidney issues for us.

While I can't answer your specific question, I just wanted to offer my support. If you're willing to share more details, please do. My understanding is that the diagnosis itself can be a length process. Regardless, please know you and your son are in my thoughts.

[Mom_of_k in reply to BearMama0321]

Oh my gosh we are in the same boat with getting hit by a bus by complete surprise from no symptoms to ckd but in my sons case he was born with posterior urethra valves that was never found or had symptoms of until all of the sudden he quickly lost 85-90% of his kidney function due to it and with dialysis his creatinine and bun have no permanent decreasing changes even after the puv surgery hints the esrd. I know for us it’s been absolutely insane.

[BearMama0321 in reply to Mom_of_k]

We just found out on Thursday that our son has reflux on the right side. No posterior urethral valves but yes - similarly “out of nowhere” diagnosis.

Wishing you all the best. Please keep us posted.

[Gonzalemi in reply to BearMama0321]

Hi, my 2 1/2 yr old daughter also has an atrophic right kidney. She was on an antibiotic for reflux but was taken off as an ultrasound showed the reflux was gone. Now we monitor her kidneys. We went for an ultrasound 6 months ago and it showed both kidneys 3 mm smaller so I’m freaking out that even the good one is getting smaller. The dr said the chances of the good one getting smaller was slim. She has another one scheduled for a year from the last but said I can bring her in sooner if it’ll make me feel better but he’s not worried about it. Any advice? Do you have your son on a diet?

[BearMama0321 in reply to Gonzalemi]

Hi there. I’m so sorry to hear this. We go for our next ultrasound in March.

Did she have a VCUG done showing no reflux to the left kidney? I know the test isn’t 100% accurate but it is pretty good.

3mm to me sounds like it could be just human error on the ultrasound measurement. That’s really really tiny. Did you ask if that’s the case?

My son isn’t on a special diet at this point. We just try (keyword) to avoid excess sodium and make sure he’s drinking enough water. We took him for a second opinion at Boston Children’s; saw Dr. Rodig. She thinks his left kidney is going to carry him. She thinks his GFR is somewhere between the two eGFR numbers we got last time. Without adding cyststin c to the calculation, it’s pretty good. When we add cyststin c it plummets but his urinalysis and metabolic panel are really reassuring, and cyststin c can be controversial to use in the formula in little kids.

I share all of this because I’ve learned so much since our original diagnosis and have so much hope now. We are very lucky but for now, our son is just a typical busy toddler. 3mm is not a big change at all; I really think it’s likely the technician positioned the calipers ever so slightly differently than last time or measured the kidneys in an ever so slightly different position. But ask your nephrologist or the attending radiologist.

Good luck!

[Gonzalemi in reply to BearMama0321]

She did have the vcug. Poor baby having to go through that. It did show reflux was gone. The dr said exactly what you just said about the 3mm being tiny and perhaps it being a different ultrasound machine. I’m so glad I found you! I feel tons better. So glad your son is doing so well. I also try to limit the sodium intake for her but she’s such a picky eater 🙈.

[BearMama0321 in reply to Gonzalemi]

I’m glad I could ease some worry. I’m not an expert and am very early in this journey ourselves. But yes, 3mm is teeeeeeny tiny. 1/100th of a centimeter! If you have trust in her provider, it sounds like they’re not worried.

Just aim to avoid pre-packaged foods. I wouldn’t put her on a “low sodium” diet without the doctor’s advice; just aim for fresh foods. You got this, mama! Good luck!

[Gonzalemi in reply to BearMama0321]

Thank you!

[Crissylately]

Hi, my son is 12 and was diagnosed with ckd with bilateral reflux nephropathy at age 3 weeks. He is now awaiting. a kidney transplant. We are hoping to hear from the transplant team soon, this is the hardest thing I've ever done........We will be in prayer for your family.