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

To all those who have asked me further for information,
Thank you! I feel we can learn from each other and the more we know the better educated decision we can make based on the advice our doctors give us. Please if you would post your results on the forum or e-mail me how the progress of your loved one is going, I would love to know and I am sure others too. Since my first posting in Nov. 2005 I have only gotten one response from someone who had the procedure done. I am still looking for others. Thanks for your help!
Sincerely with Blessings,
Nicole (Finetune8@yahoo.com)

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.

Alicia & others,

Thanks a lot for sharing information on this. Really, this is going to help millions of people who are suffering from this birth defect.

Does this defect affect on height or weight? Because, my son is having grade 5 and he has been at 5th percentile height on growth chart. He is now 4 years old.

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

hi my baby girl is 14 months old and she has reflux on both kidneys.she has just had a scan and they said one kidney is the size of an adult and the other is small.please can anyone tell me what this means .... one side has 10%feflux the other has 88% reflux no body tells you any thing ....please help