Hello everyone, my son was born with a blockage called Posterior Urethral Valves. He had surgery at 18 days old to remove the blockage. Bc he had this blockage it caused him to now have Chronic Kidney Disease. My son is 14 months now. He is stage 2 with 70% kidney function. We finally got his potassium level under control but now we are struggling with his iron levels. He is on 2 different types of iron medicine and a high iron diet as well.
Just curious to no if theirs any parents that are dealing with CKD with their little ones and if you have any advice or stories to share.
Thank you 🙂
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RachaelMae
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Hi there, my son has severe hydronephrosis on one side and a partial blockage (which we only found out about and corrected during the surgery to fix the reflux at 18 mos old).
He is 3.5 years old today, the kidney with the issues is likely not functioning, or very poorly functioning. He has a GFR of around 75-80 which has been steady or slightly improved between the 6 month increments when we started measuring. His "good" kidney seems to be growing at a normal rate.
Our doctor says that at this stage its very hard to predict the course but is hopeful that GFR will improve thru childhood.
We had some iron issues with him at about 2.5 yrs of age but a high iron diet and basic OTC supplement sorted it out.
Our doc also says kidney development occurs until about age 4, so hopefully with your little guy things remain stable or even improve.
At the end of the day, if things are stable i think it will be up to us make sure he grows up leading a healthy lifestyle, which means hydration, excersize and healthy food (no sodas and junk food) to help take care of his kidney so it lasts him into old age.
In your case, im not sure what your doctor is telling you, but given that he has 70 percent function and the problem has been surgically corrected i would hope that you can also expect his kidneys to last him into old age... that is my hope for you....
Curious to know what your doctor tells you the prognosis is?
Hello! So sorry to hear about your son, I hope everything stays steady for him! What did his high iron diet consist of? My son has been very picky lately and will only eat fruit and yogurt. He’s not a big meat eater or veggies. One day he’ll love something and the next day spits it out lol.
They did remove the blockage yes, but it was so bad that it damaged both his kidneys (just one worse than the other) before they removed it. His 1yr check up was a big marker to see how his kidneys grew with him during that year. And that’s when they said his left one is not growing and has the highest grade of reflux, while the right one is damaged but not as severely.
Drs said he will need a transplant eventually they just don’t no when.
Hi. Thank you, we also hope it stays steady... regarding the anemia, I think it's actually very common with kids around the age of your son (our other child with no kidney issues was also a bit anemic around that age.) But to answer your question, we started making smoothies with lots of spinach and greens, and an OJ base with some fruit thrown in... it ends up tasting more "fruity" than "veggie" and even our son's peers seemed to like it (tested during playdates)... this coupled with Cream of Wheat in the AM did the trick.. we also used an OTC iron drop supplement for a short time. All of this raised his Hemoglobin 2 points within about 3 months.
Also you mentioned yogurt, lots of dairy will reduce the absorption of iron, but they need their calcium too, so its all a balance (and of course you should ask to speak to a dietician that can suggest a diet based on your sons labs, because what raises his iron may also raise his potassium (and we did not have those issues thusfar).
Our son was a constant yogurt eater, so we cut back on that a bit.
I'm sorry for all the questions... but if you don't mind....
Does the damage show up on ultrasound for both kidneys or did they need to do other tests to confirm the right kidney was damaged too and it just looks normal on ultrasound? (I ask this because I fear maybe our doctor is not doing enough)
Has your son had regular checks for his GFR? If not, how do they know it's declining or steady? I read a couple of studies that put avg pediatric CKD GFR decline at about 1.5 points per year (and sometimes this spikes a during puberty but then there is potential to slow it down in adulthood). So what I am getting at, is that our children could be well into adulthood before measures like a transplant are needed.
It seems very hard to predict, which is why i'm a bit surprised that your doctor is so sure that a transplant is in your son's future... curious if they are talking years or decades with you.... but again, I'm making a lot of assumptions and I don't know all your details.
In any case, 70% is pretty high function and I very much wish and hope that it lasts him as long as possible, into adulthood and perhaps forever!
My son was born 11 months ago with the same blockage and had the same surgery at 7 days old. Unfortunately for us, his kidney function is about 10-15% total between both kidneys. He is on many meds to keep him going. We are close to him needing dialysis due to his BUN being so high and then as soon as he is big enough, doing a kidney transplant (maybe early next year). All that being said, he is the happiest guy and you wouldn’t have any idea anything was wrong. That is a true blessing! Hang in there!
Thank you so much for responding. I’m so sorry to hear about your son, stay strong. I hope everything will be ok. My son is also on many medicines but going strong! You’d never no anything is wrong with him! He is a happy little boy!
Very nervous, but what I have learned is that we take one day at a time and things generally are not as bad as they seem once you get them into your routine. We try to make the most of it and know that it is a moment in time that will pass!
Hi! I am so sorry for the delay. Life got a bit hectic for a few weeks. The doctor did see the blockage on my 26 week ultrasound. He could tell because my son’s bladder was enlarged, his kidneys dilated and low amniotic fluid. They couldn’t tell the extent of the kidney damage until he was born though.
That’s ok I completely understand that! Oh wow ok that’s great they caught it on your ultrasound..they didn’t see it on mine and I’ve always wondered if they should have. But each case is different I’m sure.
My son was also born with posterior urethral valves... they weren’t detected though until he was 14 months old and then had surgery. He lost one kidney and the other has been functioning ok until this past year. My son turns 12 this week. He did have a second valve ablation done around 5 years old. Around that time, he also started using an intermittent catheter to empty his bladder- the valves caused bladder damage, so he cannot empty it on his own. It can all feel overwhelming at times, but we try to keep it in our perspective and realize it’s just our normal. My son is an active 12 year old boy, is independent with his health care needs at school, plays baseball, and loves to take vacations! We try not to let his health needs ever hold him back, instead we try to help him figure out what needs to add to his routine to do what he wants and stay as healthy as he can be. We also have developed a great relationship with our doctors and nurses- I ask a lot of questions and trust in their expertise. We’ve sought second opinions over the years and it’s always reassuring when they agree with the current treatment plan.
Just take it one day at a time, and celebrate the smallest of victories!
When you say he lost one kidney, did he have it removed or is it not functioning? Was his other kidney damage or have reflux at all up until this last year? How did you no when the second valve came back, or did the doctors just find it at one of his ultrasounds? Our doctors did tell us that’s a possibility for us to, for it to grow back and he’d have to have surgery again. Was he potty trained before the second valve ablation? Did you have trouble potty training at all if so? Our doctors also told this could happen to our son but theirs no way of knowing till the time comes to potty train. How is his one kidney doing now??
Did you guys ever have any issues with his diet? Or iron?
That’s amazing how well he’s doing! So happy to hear that!
And I’m sorry for all the questions, I’m just trying to understand everything from all perspectives.
I think I had all those questions and more when my son was younger- I totally get it! One kidney is non-functioning. It has slowly shrunk over the years, while the other one continued to grow. We’ve thought about removing the non- functioning one because we think it’s a high source of urine production, but it has grade 5 reflux on that side and there is a concern that removing it would cause the reflux to go to his “good” one (currently no reflux on the good side). His other kidney (the good one) suffered damage and had reflux until his first surgery. They’ve never given us a percentage of how it’s functioning, but we watch his creatinine and bun closely. The doctors had always told us that puberty and his growth spurt would be a challenge; from what I understand the kidney can’t keep up with the rapid growth and we may need a transplant during this time. My son’s creatinine and bun were relatively stable until about 6 months ago and then took a sudden decline. No dialysis or transplant yet, but frequent blood checks and closer monitoring. The nurses quietly agreed with me that we are entering a new stage.
My son also had a lot of bladder damage due to the valves and reflux. He has a neurogenic bladder. It is unable to empty on its own. He had the second valve ablation at 4 (I miscalculated our years in my earlier reply). From what I remember, they didn’t actually see them, but a certain percentage grow back. We had also just changed urologists and I think he wanted to get a good look at everything. Potty training for urine was tough- I remember worrying that he’d have to go to kindergarten in a pull- up. The summer before kindergarten, my son was 5, we started intermittent catheterization. It was the toughest summer of our lives. The nurse that taught us how to cath told us that my son was the most challenging patient she ever had. He is blessed with a very good strong will! We had lots of reward charts, stayed close to home and he actually learned how to cath himself for kindergarten. The nurse was there to assist, but he did everything independently. She occasionally finds me at school events and still says that he is the most amazing boy she has ever met. About 6 months after we started daytime intermittent catheterization, we started putting an indwelling (Foley ) catheter and leg bag at night. Sometimes I look back at that year and wonder how we managed, but now all of it is part of our “normal” everyday life.
We did have problems with iron deficiency when he was a toddler- I remember giving him iron drops that tasted terrible. It was a two man job to get him to take and swallow the iron- he doesn’t remember any of it now! The only diet restrictions that we’ve had to be careful of is potassium at this point. We also have challenges with hydration though. My son always has a water bottle with him and has learned to try to stay hydrated- we’ve had a couple bad dehydration hospitalizations and he’s learned that he wants to avoid them if he can.
I am so sorry for my lengthy reply- I feel like I just gave a snapshot of our last decade! We have had lots of ups and downs, but we continue to make it work. My son doesn’t know or remember anything different about his life- the meds, the cathing, the daily things we do are all just part of our life. Sometimes I forget about all the extra things we do, and then a friend will ask why he takes so many meds or something and it reminds me. Stay strong, you’ve got this. Ask lots of questions- I keep notebooks with all my notes from doctor appointments- it’s been really helpful to look back at them at various appointments for information and as a log of who we’ve seen and tests we’ve done. I also get a disc and radiology report for every test we do- they’ve come in handy years later and for second opinions. Oh, and bloodwork results. I keep all of that in a huge 3 ring binder.
Thank you for listening- I hope I was helpful to you! I’m so glad for this forum; families definitely do have different perspectives than doctors. But we all want what’s best for our little ones! Good luck on your journey with your son- reach out anytime with questions!
Oh wow that’s a great idea! I’m going to try a smoothie for him! Do you have a recipe for a favorite one??
He is also on a vitamin iron drop and ferrous sulfate. We do have a rental nutritionist already and she did say that about the dairy..and that it’s best to eat lots of vitamin C around the time of his Iron medicine, that it helps absorb it better. Sometimes all I can get him to eat is fruit and I throw the yogurt in their to for some protein at least. We’ve had problems with his potassium as well..he was on a very restricted diet till a little over 12 months.
The damage does show up on the ultrasound (the doctors said it’s all the color on the ultrasound) and they also do a VCUG dye test to see the amount of reflux in the kidney.
He gets full lab work done about every 3 months, sometimes more depending on his results. His left kidney is not growing and has the highest reflux in it, his right kidney is damaged but does not have reflux in it. He’s basically functioning just off the one kidney. Yes, theirs no way of knowing when he will need a transplant..it could be 5, 25, or even 45 years from now..theirs no way of knowing. But it will happen they said bc he has 2 bad kidneys that can’t get better, we can just maintain with healthy diet, exercise and medicines.
I asked them once why he couldn’t just function off the one good kidney forever (bc people live with one kidney all the time) and she said people can do that bc they have one healthy one. My son has two damaged ones.
Is your son potty trained yet? I ask bc my doctor said theirs a possibility of having trouble doing so. Could take longer for him to catch on or to hold it to make it to the toilet, bc of where his blockage was removed.
Is one kidney damaged or both for your son?
I wish the best for our boys as well thank you so much for talking with me!
My pleasure, it's great to have this forum to compare information and stories, especially since time with the docs is so limited.
I will ask my wife for the smoothie recipe and post tonight, I think its pretty simple.. it also helps a lot with keeping him "regular", which is very important for all around health of kidneys/urinary system.
Thank you very much for providing more detail about the testing results and what your docs say. Regarding your question about is one kidney damaged or both for my son... this is actually why I was so curious about how you knew your son's "good" kidney was damaged.... and whether it's visible on ultrasound.
We know that my son's right kidney (the bad one that we now think isn't working at all), did not seem to grow at all with the last ultrasound.. but the left "good" one continues to grow at a steady normal pace for his age and is of "normal in size and visualization" per every ultrasound he has had.
However, my son's GFR is only around 75-80 (over the course of 2 blood tests 6 mos apart), and I am concerned because it seems like even with one healthy kidney the GFR should be higher... so of course I always wonder - "Is there an underlying issue affecting his right kidney that we cannot see on ultrasound?". The doctor seems to think it's ok and treat him as a child with "solitary kidney". But I have concerns... which is why it's so helpful to hear other stories. I suppose the fact that his GFR slightly increased after 6 months is a good sign, and if it were damaged it would be decreasing.. but again, i just don't know.... and I want to make sure to stay on top of it.
Regarding potty training, yes he is, but he hates to go pee and will often wet himself unless we remind him every 2 hours or so to go pee. Interestingly he is dry during the night.
Is your son's GFR stable over testing? Does his "good" kidney still grow as much as a normal one would be expected to?
Thank you again for sharing... ill post the recipe tonight.
Hi there... smoothie recipe is an orange juice and coconut water base, banana and frozen fruits (any kind). My wife likes to buy the organic frozen fruit mixes with berries, ect... we have a kithen aid blender and she makes a smoothie for the whole family... as they are a great way to get vitamins and greens..
The damage is visible on the ultrasound yes, from what I understand. But our doctor was verbally told us that their both damaged, just one more than the other.
That’s great news that the “good” kidney is continuing to grow!
About his GFR, I would try to not worry to to much on that bc I think with all the ultrasounds and blood work and physical checkups that something would show up to concern the doctors and make them worry as well. I no it’s hard to not worry, I do it constantly with any little thing that happens. Could his GFR be that number bc he only has 1 functioning though?
Does he hate to pee bc it hurts? Or just bc he’s a kid lol? I have talked to someone else and they said their son ended up having to use a catheter, so I was just curious of all the possibilities.
I’m actually not positive on the size of his “good” kidney..but they said they are happy with it so far. That that’s the one that’s keeping him going strong.
Thank you for the recipe! Sounds delicious! Do you add veggies in this one to?
Thank you for your reassuring words... yes, it's so hard not to worry, and I do tend to focus on every little thing, which is not healthy... generally they say that kids with one functioning kidney should still have normal GFR, as the kidney overgrows to compensate... his is growing but of normal size (for now). I guess time will tell.
Regarding the recipe, two important things since my last post. 1.) I read that coconut water has high potassium, so you may want to avoid that and use reg. water. 2.) the banana, also adds potassium, so you may want to add another fruit. For veggies, we just choose one leafy green (spinach) and mix it with the OJ and the frozen fruit.. that way it tastes more “fruity” to the kids but they still get their green good stuff.
On his peeing, no it does not hurt him - many 3yo avoid going to the bathroom unless they are forced to - so it could be “normal” for his age. However, I think his “bad” kidney is probably not concentrating his urine well and he overproduces it, so it exacerbates the problem. (i don’t recall his older brother ever being wet as frequently).
I think the catheter is needed if the bladder does not adequately empty after voiding. When the kids get older they will ask your son to come with a full bladder to Ultrasound, and then pee during the study… so they can compare.
Because your son’s kidney function is overall pretty good, I would imagine the surgery corrected the blockage to the point where emptying won’t be an issue. I really hope this will be the case..
Either way, like others here say, we just need to take it one day at a time, be diligent, deal with things as they come.. and appreciate our little kiddos…
My son is 9 and stage 3 CKD. Regarding potty training, the Dr mentioned it would be difficult potty training. For me, I trained him, 1 week later he was fully potty trained at 26 months. It completely depends on the child. Just take it one day at a time. Try not to let all the information consume you. You will have good days and bad days.
It isn’t, his kidneys have a difficult time filtering creatinine. As he matures, his CKD is moving closer to stage 4. We have noticed when he drinks 1to 2 liters of water a day, when he takes the blood test his kidneys function better. He is a very active kid, plays baseball, soccer loves to be outdoors. He is on the smaller side for a 9year old. At this stage the Dr. wants him to limit his salt but eat enough protein to keep him growing with his peers. In the last year he has asked more questions, he is starting to understand next steps. His anxiety is increasing, we have him talk to a child therapist which has helped.
I see, thanks for your response. I wish the best for you guys... it's no walk in the park, but there are options way down the road if needed. With my son, it was also a shock when we did his first blood test, that his GFR was about 70, but 6 months later it was 79 and that's where we are today... not sure what we can expect as he grows up but i'm hopeful...
Again, hoping all the best for your son... i hope this touch of adversity will be channeled into something positive for him in the long run .. i've seen this often be the case.
He was born with bi-lateral grade 5 hydronephrosis. He was antibiotics since he was born to prevent kidney infections. At 2 he went in for reflux surgery, on the operating table the reflux test was inconclusive, therefore they did not perform the surgery . We then were asked to come in every 6 months for a renal ultrasound. At 8 we were told everything looks great out of the woods. In December 2018 he was diagnosed with ADD. His dr. was putting him on a low does medication, we had a height, weight, blood pressure and blood test before he went on the medication. The Dr. called me that night his blood test had concerning numbers and we went in the next day to see a nephrologist. In the last 6 months he has had 4 blood test all with different results and GFR rates. The Dr. doesn’t have a true benchmark, however puts him at a low grade 3 CKD. He was diagnosed in December 2018.
How his bad kidney shrunk over the years, sounds like what might happen to my son as well I’m thinking. Our doctors told us that to about puberty and it not being able to keep up. Do you mind me asking what his creatinine was at for a while?
I’m curious if my son has any bladder damage..I can’t recall if they said anything about that or not. Oh my goodness that sounds so hard to do and go through. Wow that’s amazing so young he was able to do that himself! Thats great. Thank you so much for sharing all of that.
Did he grow out of the iron deficiency as he got older? Yes they smell horrible! My poor baby is on 2 different iron medicines, a reflux and one to help not get UTIs. He’s been on medicines since he was born though so he’s a pro at taking them thank god! Has your son ever had a UTI? Oh yes we had potassium issues up until recently..that’s horrible to deal with. Oh wow I bet that was painful! My son looooves water right now. It’s the only thing he drinks at this point other than milk. Hopefully when he grows he’ll still love it lol.
Haha no I’m glad you did! I love hearing other people’s stories and what they’ve been threw. I no theirs no way of knowing if this will be my sons future or not, but if it is I’m a little bit more educated now! I really appreciate it. I’m the same way with the medicines now to..it doesn’t faze us or him till someone asks a question. My son actually said medicine this morning for the first time lol.
I’m going to get more organized like that as well, with all his results and appointments. His blood work I can look up online whenever I want threw their portal which is very nice.
No problem at all! thank you for sharing with me! I do feel like you helped me a lot! And I wish the best of luck to your son and your family!
Hi Rachel my little guy was born with posterior urethral valves also! They weren’t caught until he was 15 months old and was sick and in the hospital for something else. It was very difficult but I’m so glad they caught it while he still had some kidney function. By the time they caught it his bladder was damaged and his right kidney had a great 5 reflux and was nonfunctional his left kidney was a grade four Hydro nephrosis and a grade one reflux but was functioning. He was in complete failure while in the hospital but by the grace of God three months after he was discharged somehow his creatinine and BUN were normal! He is 10 years old now and it’s definitely been a roller coaster. At the age of three they removed the right nonfunctional kidney and did a procedure called a mitrofanoff. We have intermittent Cathed him through a stoma and his bellybutton since he was three years old. He wears a bag to straight drain at night. It was very difficult at first but it is our normal now. He has stayed at stage one stage two with periodic declines. We are going to a decline right now but he’s also at that 10-year-old puberty age so we are watching him closely. He has been on iron since 15 months but has no dietary restrictions as he does not absorb sodium as he should so he can eat all the salt he wants. He drinks 80 to 100 ounces of fluid a day we tried to limit pop except for at parties and special days. You would never know there something going on with him. He also has poly Uria and produces 1-2.5 liters of urine a day. This journey is definitely not an easy one but we are so thankful for the miracles we have seen. There are many things the doctor said would happen but God has performed many miracles in his life. Not every day is good but we take it one day at a time. We going next week for retesting hoping his function has improved.
Wow that is amazing how he improved from that! 🙌 did he have to be cathed bc of the bladder damage? When he was in stage 2 what was his creatinine at if you don’t mind me asking? Is he still in stage 2?
I hope his results are improved when he goes! Best of luck to you all!
His labs were redone and his creatinine came back down lower than it was before!! In December it was 0.63 then 3 weeks ago it was 0.83 and now it’s back to 0.62!!! Praising God for this miracle!! Staging depends on size and age as “normal” creatinine ranges change as children get older. He stays right at the border of a stage1/stage2. He had his cystanin c drawn also which puts him at a stage 2 but his urine creatinine clearance was normal!! I know we will continue on this roller coaster but I am going to enjoy this moment yes his bladder is damaged and even though he can void normally he can’t empty completely which has lead to several UTIs. We cath him several times a day.
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yes his bladder is damaged and even though he can void normally he can’t empty completely which has lead to several UTIs. We cath him several times a day. 
Worried Mom thinking the worst
Newborn w/ Possible Kidney Problems. What can I expect as a parent? 
