My Son Was Dx W/ Grade 5 Kidney Reflux

S.,
My son was diagnosed with grade 5 bilateral reflux in utero. After being born he was seen by a urologist at Children Hospital in Denver Colorado. He underwent many test that were not bad. At a year of age he had bi lateral uretheral reimplantation surgery. This surgery is a fairly easy surgery and is done quite often. The biggest thing is to find a good urologist and get this taken care of before there is permanent damage done to his kidneys. My son is now 9 years old and has no ill effects from the surgery, he doesn't even remember anything about it aside from his scar. Good Luck and God Bless.

My 14 month old daughter has grade 5 bilateral kidney reflux, an enlarged bladder and her bladder does not empty fully. It took a very severe bilateral kidney infection and 6 days in a children's hospital for this to be diagnosed. She was immediately started on daily antibiotics and has had break thru infections. The best advise I can offer to to make sure your son gets his antibiotics EVERY day. Try not to miss any doses. Also, as soon as he starts to run a fever, call your pediatrician right away. My daughter does not show the typical signs of an infection until it is severe. I have to watch her behavior, her urine out put and appitite. This helps me to determine when she is starting to get sick. Also, I educated myself on this issue so that I knew what questions I wanted to ask my doctor and the specialist. You know your son better than anyone else. Stay proactive in his medical care. Grade 5 has a very low percent chance of being outgrown, but that doesn't stop me from being hopeful. Good luck with your son.

My daughter was grace 2 with no kidney problems. I could od advice on how to get diagnosed, but not much more after that. WE were released from Johns Hopkins and only need to be checked every 2 years until age 5. so sorry i will be praying for you

My son was diagnosed with Stage 3 in utero. He is 5 now, and has had no intervention and is fine. But Stage 5, your baby will likely need surgery. Just based on my experience, there are very good doctors, the science is well defined, and he should be OK once the procedure is complete. THere is likely some testing first, like a renal scan and 'reflux' test, but 'holding still' is the biggest issue on those. Find a good urologist and your son should be fine. I'm glad you caught it early.

At stage 5 he will be needing surgery to fix it. My daughter was not diagnosed untill she was 5 years old. She also has complete duplication of the ureters, enlarged bladder, enlarged kidneys, voiding disorder and had stage 3/4 reflux in the left side. For a year we tryed the antibiotics, but she had repete infections. We chose the DEFLUX procedure for her VUR and it has worked great, she is now 8 years old and has only had a few UTI's. But at stage 5 VUR your son will require the traditional surgery, deflux is not an option with that severe reflux.

This is an awesome web site that will give you tons of great information:
http://www.deflux.com/Deflux.aspx?id=101

My girlfriends daughter was diagnosed at age 2 with stage 5 reflux and she had the traditional surgery, she is now 8 years old and has never had another UTI. I know it sounds super scary to think your baby is so young going in for surgery, but the younger the better!! He will have little to no damage done to his kidneys from the reflux and will not remember the surgery. My little girl has some pretty bad scaring of her kidneys from going undiagnosed and having so many UTI's over the years. And remembers going to the hospital. Think of it as a blessing that you found out early enough to fix it right away! If your in the Phoenix AZ area recomend Dr. Michael Nuygen. He is contracted through Phoenx Childrens Hospital. Best of Luck!!!!

Hi I'm T.. Mom of Jack who is almost 4 yo. He had posterial urethral values in utero but not sure what grade refux it caused. Has since been diagnosed with CKD. You mayfind some useful info at puv.org. Feel free to email me too. Not sure if his refux was caused by puv but there is lots of helpful info and support on the site regarding kidney stuff! Lots of great care is available! Don't dispair!! Jack is about to be 4 and he's doing great!! Not even on any medication as if now!