Chronic Hydronephrosis, Will CKD Progress?

[Tigriz]

Hello all, I am so thankful to have found this community! Our story is a little bit different than some, but I'd appreciate any and all input. My son, now 11 years old, had episodes of vomiting and stomach pain from the time he was 3 years old. Dr's though he had food sensitivities but could never find anything definite. When he was 7 they finally discovered he had unilateral (one side) grade 4 hydronephrosis. He had laparoscopic surgery and stent placement to correct. Stent was removed 6 weeks later, and pain and vomiting episodes returned. Discovered the first surgery did not correct the problem, so an open pyeloplasty was done which has corrected the blockage as far as we can tell. Overall size of his kidney has decreased a good bit, but he has some definite damage, with mild, stable hydronephrosis on that one side. He has since developed hypertension as well. He has very little stamina anymore, itches all over all the time, gets fatigued very easily, is always freezing, is very pale and just generally can't be on the go for more than 5 or 6 hours without needing a nap or a rest. I am getting conflicting information from his doctors (pediatrician believes he has CKD and overall function may continue to decline, especially with his symptoms, but is hopeful that at worst his damaged kidney may eventually be removed and his other should carry the load). He has had both blood and protein in his urine tests in the past, but the last 6 months or so they've been clear. Nephrologist keeps patting us on the head and telling us the chronic hydronephrosis is nothing to worry about and that the hypertension is probably actually primary hypertension (and thus not related to his kidney damage, which I find VERY hard to believe). So my question is this. Are we waiting to eventually remove the damaged kidney and the whole situation hopefully resolves along with the symptoms? Or are we in fact looking at more likely progressive CKD affecting both kidneys? We are obviously prepared to deal with either, I simply feel like there may be more I could be doing to help if I had clearer explanations of exactly what is going on!

Thanks for letting me vent! I appreciate any input or suggestions.

P.S. He has also started having dizzy spells over the last couple weeks. He has an appointment with both doctors coming up next week, so if anyone has any suggestions of things to ask about, please share!

[Oceanblues]

Hi Tigriz, i sent you a PM.

[Johnsmom01]

I had a son born prematurely due to extreme kidney disease, hydronephrosis being one of the problems. Eventually his right kidney quit functioning. He had a pyleostomy placed straight out of delivery room.

I would suggest keeping an eye on his labs, specifically; creatinine, potassium, BUN, PTH, vitamin D, Hemoglobin & protein levels in urine. Also elevated phosphorus can cause itching.

The elevated BP could be issue due to kidney issue, but maybe not.

My son had nehprostomies to both kidneys at one point also. Then just a drain tube to the right one for awhile. The main issue is to make sure it is being drained from the body. Hydronephrosis can cause symptoms not unlike a UTI- achey, tired, low grade temp.

Prayers for your family & your son. As a mother that dealt with a child of kidney disease 36 yrs, I know it can be worrisome & taxing on everyone.

[Oceanblues in reply to Johnsmom01]

Hi Johnsmom, I had messaged Tigriz in greater detail about my experience and what I would ask the doc... thank you for replying here.

My son is only 3, but has severe hydro on the left side and had successful reflux correction surgery when he was about 1.5 yrs. The right kidney seems to be normal on US. However we just started getting his bloodwork done and his overall kidney function is about 20% less than the avg for his age.

I wonder whether that is his "normal" as the hydro kidney probably barely works. Testing over time will tell I suppose.

This is why this thread is of particular interest to me, and especially your post.

This seems to be a very gray area, and we do not know what to expect. Whether it will improve, whether the right kidney will compensate, or if there are issues, ect..

If you feel comfortable sharing, i'm curious as to whether your son's situation eventually stabilized? Also, whether stent/draining should be done.. as my son's hydro is stable but not improving... and this was thusfar never discussed with the doc... I worry that it could cause further damage to his renal system.

Anyhow, thanks for reading.

[Ktaylor34]

My son was born with bilateral hydronophrosis grade 5. The dr monitored for 2 years and felt he needed corrective surgery for the reflux. He went in for the surgery at 2 years old, when he was on the operating table they performed a reflux test and the test was inclusive; therefor they canceled the surgery. We took him off all antibiotics at 5, and yearly check-ups. For the past 3 years he has not had a kidney infection and his kidneys haven’t improved but they haven’t gotten worse. At 8 his pediatrician went ahead and pulled a simple blood test, as my son was about to go on ADHD medication. The dr. Called me that night as his creatine levels were elevated. We had Dr. apt eveyday for the next 2 weeks he was diagnosed with CKD 3. Not every case is the same, however if your not happy with what the Dr. is telling you, please seek a 2nd opnion Looking back I wish I had when my son was 2 years old.