Parents of Children with Kidney Disease


Parents of Children with Kidney Disease

A group for parents of children living with kidney disease.

Members: 21
Latest Activity: Jul 28, 2017

Discussion Forum

Bladder dysfunction after posterior urethral valves

Started by sheryl. Last reply by Chrissie Apr 8, 2016. 27 Replies

Hi JoDay and Heather: Thought I would move this discussion off the main wall and into its own thread.My son was toilet training at the initial time of diagnosis, which is now almost 4 years ago, and…Continue

any PUV parents here?

Started by jreideveleigh. Last reply by sheryl Jul 19, 2015. 1 Reply

Hi,just looking to connect with other parents of children with kidney disease, but also to hopefully connect with any parents out there who have little boys with kidney disease caused by posterior…Continue

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Comment by Cath on November 13, 2014 at 2:10
Hi there, thank you for the advice - sorry it has been so long since I have written on here. I was wondering if any of you have gone through the decision making process of having another child after you found out that your child is chronically ill with kidney disease? What factors did you consider and do you have any advice? (The situation we are in is non-genetic, so the likelihood of this happening again is less than 3%). Thank you!
Comment by JoDay on February 8, 2014 at 19:28

Hi Cath, My son 71/2 has bladder dysfunction and we have had a fantastic teacher at his school who works with us. We have explained to her about Alex's need for timed voidings and she has let the other teaching staff know that when Alex needs to go, he NEEDS to go. We had issues when he first started school because during outside time the students we not allowed back in the building. There has been an exception made for my son (to try to limit accidents). Open communication with your school is the best advise I can give. How old is your son right now?

Comment by Cath on February 3, 2014 at 20:35
I would love to know how everyone is coping with the stress. We are not at the stage yet where our son needs a transplant, but we know it will eventually come to that and I worry how best to handle it for him, our older son, financially and with work, whether I should keep many thoughts go through my mind about it. He hasn't started kindergarten yet and I am already worried about school. I know I can't control any part of this situation, but I wish I knew what to expect in terms of some of the above. Does anyone else worry like this?
Comment by JoDay on January 25, 2014 at 20:32

Hi Sheryl and Heather, my son ( 7 1/2) also has bladder dysfunction. His Urologist in Halifax tells us he has the bladder of a 60 year old man with prostate issues. He has never been completely toilet trained and needs to wear a watch with an alarm for timed voidings. He only just reached 41 lbs, so he is quite tiny. He has been on a medication to make his bladder less 'twitchy' to avoid the dribbles and leaks but the Urologist thought this was doing more damage than good. He takes a laxative daily to ensure his bowels are emptying and not pushing on his bladder. He has had an inguinal hernia which was operated on at age 4, a VCUG test that could not be completed to due complications, the surgery to destroy the tissue from the PUV, a procedure to descend his t******* into his s******, many renal ultrasounds, and uroflow tests and yet we do not feel well informed by our doctors.

Comment by Heather Ayling-Langdon on January 25, 2014 at 16:08

Hi Sheryl is your son on any medications to help deal with his bladder issues and/or what recommendations did the urologist give for helping manage the bladder issues?

Comment by Heather Ayling-Langdon on January 25, 2014 at 15:31

oops I meant to say that even though he is starting to use the toilet he will still need to wear pull ups because of the dribbles and I don't think he feels that he needs to urinate when his bladder is so full which I think is due to reflux and the thickened wall bladder.

Comment by Heather Ayling-Langdon on January 25, 2014 at 15:13

Hi Sheryl, I noticed that you mentioned that your son has bladder dysfunction, my son has a thickened wall bladder and is polyuric and has a grade 4 reflux. He is in the early stages of toilet training which helps a bit and he had a urodynamics observation in December to see what his intake of fluids and output of urine is like and how well his bladder is draining. Hopefully I will hear soon what the results are. My son still needs to wear pull ups and diapers even though he is toilet training because of the dribbles and reflux.

Comment by sheryl on January 25, 2014 at 10:45

Hello JoDay, Heather, and others,

My son also has renal disease due to PUV.  He is now almost 6, and was diagnosed at 2 following a UTI, which led to ultrasound, nuclear scanning, and then cystoscopy to diagnose and then remove the PUV.  Nothing had been seen in his prenatal ultrasound or in his first 2 years; despite our seeing a pediatrician for excessive crying ("colic"), his renal/urologic system wasn't investigated.

He had hydronephrosis, hydroureter, trabeculated bladder, and grade 5 reflux.  He is currently stable; though his GFR has decreased since his diagnosis his electrolytes and other factors have stayed relatively stable.  He takes daily antibiotics and an ACE inhibitor, and is seen by nephrology and urology regularly as well as having bloodwork, urine cultures, ultrasound and other testing as needed. Bladder dysfunction is an ongoing issue that we have to manage.

I am a RN: though I don't work in the renal specialty it does help to be able to understand the condition and the recommendations of nephrology/urology, so if you have any questions I can try to answer them for you.

The issue of growth that a few have mentioned is interesting.  We monitor my son's growth of course, but he is around the 75% and staying stable there. His weight percentile has dropped as per normal for his age group, but his a little more than the curve so we are currently adding some more calories to his diet as well.  My husband and I are both very tall, and so it will be interesting to see whether that impacts how tall he is despite his CKD. None of our specialists had ever mentioned that ALL kids with CKD have stunted growth, so it's interesting that this is mentioned by others' doctors.

Comment by Heather Ayling-Langdon on January 25, 2014 at 9:22

Hi JoDay, My son has Chronic Kidney Failure and PUV. He was diagnosed at birth, he was diagnosed with bilateral hydronephrosis in utero but didn't know the cause until he was born. After testing was done he was diagnosed with PUV (obstruction). He had surgery at 4 days old to remove the obstruction. He has bilateral kidney displasia due to the damage from the obstruction in utero. When he was born we were told that he might be on dialysis by the time he would be 9 months and as far as how his kidneys were doing to take it day by day as his electrolytes potassium/sodium were not doing well. His potassium was high and his sodium was low and his creatine was high as well. It was a scary time for my husband and myself for sure. Thankfully he has not had to be on dialysis. He is 3 years old next month and his kidney function is normal at this time which is a relief:) The Nephrologist and Urologist have explained alot to me about kidney and bladder function in a way a parent can understand. I have done some research about his condition on the internet but am very careful as what websites that I read for the info (mainly medical websites) like the kidney foundation and I also keep in mind that every child's condition is different and how their body's respond to it as they grow. If I can be of any help (from a parent's point of view) I will be glad to talk with you:) You can add me as a friend if you would like:)

Comment by JoDay on January 22, 2014 at 15:35

Hi everyone,

My family is just beginning our experience with Kidney Disease. I have a 7 1/2 year old son who was born with Posterior Urethral Valves (PUV) which was not detected until he was 4 1/2. On our last visit to the IWK we were informed we would be seeing a Nephrologist. This was all new to us as we have been seeing a Urologist for about 3 years now. The Nephrologist told us mild Kidney failure and my heart dropped. Any information would be valuable for me to try to understand my son's condition.


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