Infant Girl with Urinary Reflux

This was my diagnosis 36 years ago. I think most outgrow it but I have just had to adjust to having a real touchy bladder. When I have a bad year, it can be quite bad. Right now I have not had a UTI or a bout of what they call "spastic bladder" for 2 years (knock on wood).

My doctors are sooo hung up on meds and antibiotics. But I was fed up by my 30s. I am now very careful all the time (not just when it feels like a UTI might be brewing) about water intake, caffeine intake, citric intake, alcohol intake, cranberry juice (not cocktail - just don't even bother with that), mild soaps, cotton undies...I could go on! But my point is, the more knowledgeable I became and the more control I assumed for my own well being...The less I seem to be bothered with problems, doctors, and meds.

My daughter also had urinary reflux and was diagnosed when she was 6 months old. She had grade 1 on one side and grade 3 on the other. That was when she had her one and only UTI. They also wanted to put her on the antibiotics, and honestly we tried. It was a NIGHTMARE trying to get the kid to take them-- we tried flavoring it, putting into her bottle, everything we could think of but it got to the point where it took both of us to forcibly hold her down and force it down her throat-- and we all ended up in tears over it. I seriously worried we were traumatizing her emotionally. So we quit and I was RELIGIOUS about trying to make sure she didn't get another UTI so that there would be no damage to her kidneys-- b/c like everyone else said, it can do permanent damage. She took very short baths or I just hosed her down to wash her off-- no sitting for any length of time in perfumed soaps. We used the expensive, but worth it, Lansinoh Clean and Condition wipes after poops to make sure she was VERY clean-- they get poop off like no other wipe I've ever seen, especially in the vaginal area where it can creep up in places. And I was constantly checking her diaper for poop. Always use swim diapers in the water-- never regular diapers. Cranberry juice. We rarely let anyone else change her diaper for fear they would wipe her wrong and if we did, we briefed them on the proper techniques and supervised! No joke! We were crazy about it. But anyway, she never did get another UTI. We had some scares-- and you should always take her in when she has an unexplained fever to check just in case-- but she always came back clean. We did her yearly follow up VCUGs and kidney ultrasounds with a pediatric urologist. And thankfully, at her last checkup, her urinary reflux was gone and she had no visible damage to her kidneys. So yay! I would push your pediatrician to get you a referral to a pediatric urologist (I don't know one here since we lived in Arizona during this) so that you can get your questions answered, but I have a feeling he/she will tell you the same thing about the antibiotics since it is the standard treatment and can work. Good luck!

Blueberry supplementing prevents e.coli from attaching to the UT walls...until she is older and can have the surgery, consider blueberry puree in her cereals (which she can start in small amounts now to prevent infection).

My youngest son had this and it resolved itself by his 18 month checkup. However, make sure you do find a good pediatric urologist to keep an eye on your daughter. Since you have the condition, I'm sure you're aware how serious it can be. They wanted to put my son on the antibiotics for his entire first year of life, and I decided against it. I gave them to him for about a week and then thought of what I was possibly doing to his system if I continued for a year! However, you have to weight the severity of your daughter's reflux. My son's wasn't that horrible, and I DID decide that I would immediately put him back on the antibiotics full time if he developed a bladder or kidney infection. At one point I had to take him to the ER because he was running a very high fever and they had to do the whole catheter test on him (I hate that so much -I've had plenty due to a history of UTIs and bladder issues, but to see it done to your baby is rough!). He didn't have any type of UTI or anything though so I kept him off of the antibiotics. Do they have her scheduled for a follow up with the dye and the catheter and the imaging at 18m? Maybe hers will resolve. If not you can go from there regarding what a pediatric urologist recommends. Definitely find one of those though instead of the regular pediatrician! That's their whole specialty, so I felt a lot more comfortable seeing them about my son.

My little girl was diagnosed with Grade 3 VU relfux at just a few months of age. She got her first and only urinary track infection at 8 weeks old. She will be 3 in January and we have been seeing a pediatric urologist for about 2 years. She has been on antibiotics every night for most of her life. I don't like it, but it's necessary to keep her from getting infections. Infections can cause scarring on the kidneys which is definitely the worse of the two evils. We have to go in every 6 months for a kidney ultrasound. Every year we have to have a VCUG to check the grade - that is probably my absolute LEAST favorite day of the entire year. The good news is that most kids tend to outgrow this by school age... We are really crossing our fingers that our little girl grows out of it too.

***EDITING MY ANSWER***
I am editing my answer to say that daily antibiotics are not ideal, but kidney failure is the worse of the two evils! If your daughter has had an infection, then by all means keep her on her antibiotics. Kidney infections scar the kidneys which is irreversible. The scarring eventually can cause loss of function as well as high blood pressure. The risk of the VERY small dose of daily antibiotics is A LOT SLIMMER than the risk of renal failure with untreated kidney reflux and repeat infections.

Two of my kids were born with kidney reflux. My daughter had surgery to repair hers last Feburary at age 23 months. She just had imaging this week and she is cured - reflux free. She was a grade IV. My son's is not as severe as hers and he is outgrowing it. He is NOT on antibiotics now as his grade is down to a 1/2 and he has never had an infection (boys aren't as prone to them as girls). My kids were both diagnosed in utero.
My son was on antibiotics for his first year of life - when he was born he was a 4 on one side and 2 on other side. If you have any other questions feel free to PM me. I think a pediatric urologist is VERY important to have! In my experience, regular ped's don't know much about this condition.
Did you have surgery to repair your reflux? If so, was it successful?

Get a pedi urologist right now ! My son was born with PUV's but doesn't have the reflux. I have many many friends with kids with reflux. Every one of them uses a pedi urologist. This is what the specialists deal with. A pediatrician is great but they just don't have the training and experience necessary to deal with stuff like this. The best group I can recommend is the pediatric group in FW with Urology Associates of North Texas. Dr. Pinto & Dr. Puegach are awsome. There's another doctor in there now also but I don't know about him. This group is one of the best in North Texas. We have used them since birth for my son (and he's now 5). I will say - with my son we did the antibiotics the first year of his life. I do believe they prevented infections with him. PM me if you have any questions.

My infant daughter had the same thing and the prophylactic antibiotics worked very well for her. I think she was on furadantin. She had no problems or side effects. And no more UTI's. We did go in monthly to have her urine checked, but the results were always clean. Eventually, she outgrew her condition.

Hello! My 2yo was diagnosed in July. She didn't show "real" symptoms until May. She had a UTI for over 2 months and were sent to a Pediatric Urologist (Dr. Rhee @ Children Hospital, Peoria,IL) and he determined she had Bladder Reflux. She has been on the low dose antibiotic for a couple of months and no more "peepee hurts". We are so happy that it is working! We will have to have her checked every 3 months for a year~then hopefully she will outgrow it! Good luck!