Kidney Reflux Grade 5 for Toddler

My name is JJ, and and I am Lynn’s hubby (she runs this website). I am NOT a doctor, but I can give you some idea of what they will be doing and what the effects will be.

First thing is first: Don’t panic.

With the treatment he is on, his life is far from in danger. All thing considered, this is a great birth defect to have. Its easily treated to a maintenance level, and the surgery risks so low that they are on par with every other surgery—basically the same as a tonsillectomy or a hernia repair. Recovery time *is* greater than a tonsillectomy tho. Expect your son to be in recovery for a few weeks at least. I was out of school for about 4 weeks, if memory serves.

What they want to do is to replace a chuck of his ureter with a longer tube secured to the base of his bladder.

Think a “J” shape, here The kidney is up to the right of the J, and the ureter goes into the bladder goes down the right side, follows along the bottom, and then comes up the left side. As the bladder fills with waste, the pressure increases, and the tube gets squished, cutting off any backflow into the kidneys. The same thing happens for the left kidney as well. In your son’s case, as well as mine, this ureter dangles inside the waste, and there is nothing to create pressure *against*, so waste flows back into the kidney. However, my reflux was on the left side, not the right.

The surgery performed on me when I was 12 was open abdominal. They put in a section of plastic ureter and also a small section of the bladder. I am now 35, so this was before they had really amazingly good plastics…back then it was just really amazing plastics, and mine will have to be replaced at some point. In the case of your son, my *guess* is that he will probably have to have it done twice due to his young age. (body grows, plastic doesn’t), but your surgeon will have a lot more up to date info on that.

The surgery is major surgery, but is rather common with girls, so good urologists know what they are doing. Don’t bother looking for info on boys and reflux…it just isn’t there. The incidence of reflux on males is ridiculously low, but not uncommon in girls.

Please please please ask your urologists ANY questions you have. Do NOT proceed unless you are entirely satisfied with his or her answers. Change urologists if you need to. However, this goes for ANY surgeon or doctor.

AS for lifestyle: er…he can do anything. I have been limited from one thing: joining the Military – they don’t wanna assume responsibility for my “plastic plumbing”. But even that might have changed in the 17 years since I tried to join. I played soccer, golf, shooting sports, bicycling. I got married, had kids, no problem. I do situps, stretches. He might wanna lay light on the boxing, but I have even done some of that (with gloves). I kinda took it easy playing football when I was a kid, but the doctors cleared me for that, as well.

On a personal note: the scar *I* have is across my abdomen, above pubis, below belt line. No big deal, really. Bathing suits are no problem. His scar will undoubtably be even less.

I would wish you good luck, but you are really in the best position possible for this. Your son is stable, and it sounds like you are engaged. He is in good hands.

Lynn Siprelle, Editor

I am 41 and I was in one of the first groups of people to have surgery for this issue. I had the surgery when I was 11 yrs old at Duke University Hospital. I had kidney infections almost non stop from the time I was old enough for them to diangose them. I'm certian the surgery has evolved over time and your son will be in pretty good hands. I only have one functioning kidney, but was that way before the surgery. I have given birth to 3 children, and lead a normal productive life. I can safely say that Dr. Paulson saved my life and I would not have lived to adulthood without the surgery. I do not have any recourring issues from the surgery or my right kidney.

That being said, it sounds like your son is in better shape than I was starting out. If they are advising surgery, and you are uncomfortable, you should get a second or third opinion until you feel comfortable. Once you feel you have made the best, and most well informed decision you can, then move forward. And if you are asking about height issues, I am 5-3, but my dad is only 5-6 so that might not be helpful.

Every child should be provided a good care by his parents. Sometimes people thinks that they are now perfect and suddenly they suffered from a big disease like kidney infection, then they need not to worry because they some disease may occurs without any predefined infection.
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alizia
http://bettingchoice.co.uk/Totesport.php

Like the 1st case, my son who is two, was also born with kidney reflux, but we only found out about it 6 months ago after he was diagnosed with a urine infection (fever went so high he had convulsions). From there on, we hopped on that unknown train of kidney reflux. After having done ALL the tests, it was confirmed that he had Grade 5 reflux, and after a 2nd infection 2 months ago (while being on low dose antibiotics) we are now scheduled for surgery on the 21st of this month. I have been looking all over the Net for info, and I have to say that this site has helped calm my panic. I know we don't have a choice in the matter, but it breaks my heart that after all the hospital trips and all the suffering my little one has gone through, I still have to put him through this. So I am trying to focus on Christmas and how all will be done by then. If anyone has had a child recently go through the surgery, I would appreciate your story...I want to know what to expect in terms of post surgery and recovery from a parent's point of view.

Thank you!

My daughter was just diagnosed with stage 5 reflux in both kidneys. She had a 2 vessel umbilical cord. Does anyone know if this is why she got the kidney reflux. No one in our families has kidney issues. Anyway she is on antibiotics till she gets older for the surgery. Anyone know of some good sites for information. Thanks.

my daughter was just diagnosed with reflux and i am a single mother....i dont know where to go what to do....ive looked it up and the more i look into it the worse i feel...didn't know she had any kidney problems until we ended up in the hospital with a 104.9 fever....she is 18 months old and has been sick her whole life....could something like this cause her to be sick like she is or could she have even more wrong with her...she had tubs placed in her ears when she was 10 months old and now we are facing possibly having that surgery again since the tubes fell out(one more ear infection and they go back in)...my daughter is my life and my world im so scared and lost...we would have to travel out of town for the surgery since there is no pediatric urologist her in town.....can anyone give me some information on what is to be expected down the road

WOW! to find this after reading about the Brazilian model who just passed from septicimia after misdiagnosed UTI's....alleviates my fears so much.
My daughter began running HIGH fevers last fall. Fatigue and loss of appetite were her only syptoms. Although a strep test came back negative, the physician decided to treat as strep..'could be false negative', he said.
It was subdued for a few days and a week later she's not any better, running a high fever again and extremely fatigued, diagnosed as a UTI, and again, two weeks later she was sick...and so it went.
Finally, a pelvic ultrasound and catheter were performed. I never want my 5 year old daughter to 'have to have' one again.
She has been diagnosed with a grade 1 reflux. After reading so many stories of grade 3 and 5, I almost feel guilty being so concerned. The Dr. said if she is to get another infection they will proceed with suppressive antibiotics for a 3-6 month period.
Can anyone offer advice/feedback as to their child's experience of being on antibiotics for so long? AND what are the side effects/drawbacks?
Thank you for helping me feel like my daughter and I are not alone in this.

As many of you have said, I too am so grateful to have found this site. It is near impossible to get information on the surgery that my son will be having next spring.
When I was pregnant with my son, I suffered from pre-eclampsia and was on bed rest in the hospital. After my last ultrasound, they discovered that he only had his left kidney. When he was born at 32 weeks (3 lbs. 13 oz.), the urologist that was assigned to us said that after the VCUG test they did not find any signs of reflux. We were relieved and focused on getting our preemie home from the NICU. We continued to see this same urologist and a month after birth he decided to do another VCUG test where in fact they did find that he had Grade 5 reflux in the solo kidney. This was devastating news for us. The radiologist who performed the test was so insensitive and said that our child would probably be placed on dialysis by the time he reached puberty.
Our urologist wanted us to have the surgery that month (keep in mind our baby was 1 month old and weighed only 4 lbs) but I had a gut feeling that we needed to get a second opinion. We went to a highly recommended urologist in Dallas and I expected him to give me the same opinion. To my surprise he was extremely against operating on a baby so small and said that he has even seen kids with Grade 5 start to heal as they got older. We started a daily antibiotic (primsol- a component of Bactrim that easier on the stomach) and have been UTI free for 2 1/2 years.
We see a nephrologist every 6 months and have a urine test and blood drawn to check his levels. Once a year we do a VCUG to see if there has been any change in his reflux. Unfortunately his level has not decreased, so this last year he said that now that he is older, we can plan for the surgery next spring when he is 3 1/2.
I am always on edge though when he gets a fever or wakes up with dry diapers. Apparently his bladder is huge and he can hold a lot of urine. He also goes through phases where he just won't eat for me and he is so little for his age. He only weighs 23 lbs at 2 1/2 and is in 18-24 month clothes. I thought his weight was due to genetics or being premature, but now I'm scared it's due to his kidney.
I relate 100% about the trauma of all the testing. He is so scared of doctors and I get so stressed before testing. I almost think it's harder now that he's older since he remembers the last time and says "Mommy, let's go home....no more....all done please" with huge tears. We had a renal scan done when he was a year old that was so traumatic that I pulled him off the table sobbing and told the radiologist that enough was enough.
Another side effect of the antibiotic is that he has terrible plaque build up and so we have to get teeth cleaned every 3 months and that is just one more fun thing to go through.
I just feel like we all need to share our stories and information so that we can make an informed decision for our children about surgery, etc. I just hate the thought of putting him through something so invasive just to rule out one cause of urinary tract infection.
If anyone wants to stay in touch or can tell me about the recovery from the surgery, email me at baylorkls@aol.com

Thanks to those that started this awesome forum!

I am a 23 year old mother and my daughter is nearly one. As a child I suffered recurrent bladder infections on and off for a few years. Eventually it got to the stage where everytime I came off Triprim I suffered another bout. In 1994 I underwent a cystogram at the age of nine and it was discovered I had a bi-lateral grade 5 reflux (in both kidneys). Five years earlier my younger brother had an operation to fix the same problem but his was only a grade 2. I was pretty much immediatley booked in for emergency surgery at a private hospital which the NZ government covered costs for due to the health risks of waiting for surgery at the public hospital. After my op I had a catherdar from my bladder coming out my stomach. Unfortunatley this didn't seem to work so after much pleading with the nurses to let me urinate naturally I had one inserted into my urethra. I had alot of pain whenever I got a blood clot in the tubes and to relieve the clot someone had to squeeze the tube which hurt even more! It all had to be done though and the benefits outweigh the hurt 100 fold. This bag worked and after probably around a month of getting around with it strapped to the inside of my leg and not being able to sit down properly it was removed. Initially I had discomfort whenever I emptied my bladder and this was apparently due to scar tissue. This lasted maybe a year.
Things are fine for me now and as far as we know I didn't have any plastic inserted, but that it was done using a muscle of mine which tightened and stopped the urine retracting.
After my reflux was discovered my older brother was taken in for a cystogram and it was discovered he to had reflux. Fortunaltey his was only grade one and didn't require treatment.
Now, as I know this is heridtary I am looking into getting my daughter tested. All the best to everyone affected, families included, and be aware it runs in families between siblings possibly, so if in any doubt get everyone checked out.

I too found out my son had problems when I was pregnant. This allowed me to go and search out the different urologist and find the one I felt the most comfortable with. At two days old he had his first surgery- to open up the valve that was blocked. Two days later he was septic. with menigitis. This infection is what caused his kidneys to be damaged. At one year he had a VCUG grade 5 reflux still remained but his kidneys were growing and functioning well.( no surgery now) At two he had another VCUG still grade 5( no surgery yet), met with a nephrologist who started to talk about growth hormones since he was on the small side. I discussed a lot with all I knew in the medical field and felt that at this time his kidneys were growing, test were fine just needed to get rid of the reflux. He has been on Keflex his entire life and never has had a UTI thank god. At three another VCUG. still grade 5. The urologist then sat us down and went thru the pro's and cons- 90% chance the surgery will fix this with no further problems down the road. But at age three the chances of it ever improving was very slim. If we chose to not treat then keep on Antibiotic and wait more. But if you get a UTI it just increases the chance of kidney damage that can not be fixed. thus bringing in many other diseases down the road, like chronic hypertension, kidney disease etc. As hard as a decision it was, doing the surgery was my greatest chance at giving my son the best and healthiest life even as he got into his older years. It was the hardest decision and the easiest to me. The stress was almost unbearable!!!!! The thought of putting my child thru this was a war in my brain. But he went off to surgery not knowing what was going to happen.His first week after was a lot of motherly love, and compassion. And one week later he was back on his feet living his life to the fullest again. What the outcome is I won't know completly for 6 months. I just keep my fingers crossed that it will give him a life time of not worrying everytime he got sick. To give him a chance at sports if he chooses, and to put my head down at night knowing I tried my best for him.
This disease has such a terrible cycle, and if medicine and technology could break the cycle for him then I thank them all.

I have been so fortunate to work with such a wonderful urologist who knew when to be patient and understanding at times and firm when he had to. Not once did I ever feel the need to second guess or question what he was doing.

Dear friends
My son had VUR Garde 5 on one of his kidney from birth.. we kept him on antibiotic for one and half year, during this thin he got infected once and has one scar also.. Now we got him operated on 25 th July 2009 and got the ureter re ipmlanted with a plastic which they will remove after four weeks.Amezingly He was on his feet within a day..
My son is 1.5 tear old and is doing well.. The surgery was done in Manipal Hospital,Banglore,INDIA

With Best Wishes to ALL
Basujagadale@gmail.com
INDIA

My daughter is almost 4 month and was diagnosed with kidney reflux grade 3 on the right side at 2 weeks old. Since then she has been on antibiotic Keflex 2ml/day which is giving her bad diarrhea I also give her live culture bacteria from whole foods to help restore her good bacteria but its not really helping . the doctor says she has to stay on antibiotic to prevent infection but she has really watery stool 7 times a day. Other than that she looks perfect, very happy healthy baby! Im so glad I found this site, and can connect with other parents that are going thru this.
my email: dyana2500@aol.com

My daughter was diagnoised about 2 months ago for Kidney reflux. Her right kidney is half the size of her left kidney. Her right kidney is only functioning at 17% with alot of scarring. She was very close to having to have her right kidney removed. They are going to do surgery in November. She is on Bactrium for the UTI's. The VCUG was horriable for her. I am not looking forward to them have to do that again after the surgery she is 4 and still remembers the whole process. This is a horriable prosses to go through as a parent there is so many painful test and it is heart breaking to see your child scream "help me please don't let them hurt me". I feel for every child who has to go through this. Try to be strong for you child because unfortnatly this process has to be done in order to get your child healthier.

Hi, I am a 33 year old mum of two. I was born with kidney rflux which was left undiagnosed until age 5, both kidneys were grade V at diagnosis. I had bi-lateral ureteric re-implantation at this age. I still get recurrent UTIs and have a weak immunde system. I remained incontinent at night time until age 18 but am now fine. I have had a couple of wet bedding incidences when I have infections but luckily have a very understanding husband. I was an extremely ill child before this op and they were talking transplants if it didn't work as I had scarring causing damage that was 48/52%. Since th op the function has remained unchanged and I had two healthy babies. i am 5ft and small compared to my family and was told the reflux may be a factor.