Anyone have to deal with urinary reflux?

[MaiseyDog]

Emery was diagnosed with a UTI back at Thanksgiving. We had follow up radiologic studies done and it turns out she has stage 3 reflux on the left and stage 1 on the right. We have an appointment with the pediatric urologist tomorrow and I've been told he's going to want to start prophylactic antibiotics to prevent any more UTI's. I'm not sure how I feel about this and was wondering if any of you had dealt with urinary reflux? Did you child have more UTI's? Did they outgrow it or need surgery? Did you have to do prophylactic antibiotics? Any BTDT advice would be great.

Margaret

[american_mama]

he's going to want to start prophylactic antibiotics to prevent any more UTI's. I'm not sure how I feel about this and was wondering if any of you had dealt with urinary reflux? Did you child have more UTI's? Did they outgrow it or need surgery? Did you have to do prophylactic antibiotics? Any BTDT advice would be great.

Margaret

My two nieces had this problem for about 7 and 5 years, respectively, and have had both surgery and daily antibiotics to correct it. It has been an ongoing, but minor medial problem for them both. My older niece was diagnosed after developing a UTI when she was an infant, and I don't think she had any further UTIs. I am not sure what sparked the diagnosis in her sister. They both took daily Bactrim, a common UTI antibiotic, for years. It tastes bad, but the girls either got used to it or just didn't complain. My sister thought the Bactrim caused some occasional constipation, although no medial provider ever agreed with her that Bactrim was a cause. Both girls had at least two VCG's over the years (not sure of the abbreviation; it's the scan thing to see how blocked their whatevers were).

The younger child had the milder case and eventually outgrew it, but my older niece had outpatient surgery about a year ago. She went to a pediatric urologist who does these all the time and her recovery was very easy (slept when she got home and was fine and went to school the next day). I believe the surgery involved inserting what my sister described as a "sugar tablet" through possibly the urethra: what I remember most is there was no incision and very low risk of side effects from the procedure and from whatever was inserted.

Prior to the surgery, my niece had to pee a lot because she'd go, then soon after some reflux would occur and she'd either have to go or feel she had to go again. The surgery was supposed to completely correct that, but has only partially corrected it. So far, my sister had been told that habits are making my niece think that she has to go and she needs time to re-train herself. Last I talked to my sister, she wasn't buying that explanation and was probably going to make a second follow-up appointment to get some better answers.

PM with your email if you have further questions and I'll pass them on to my sister. In particular, if your child balks at the taste of Bactrim, my sister can tell you how she got her kids to take it. All I know is that it was not a struggle.

[TaChapm]

Jaci has Grade 3 VUR on both sides. When she was 2 months old she got a bad kidney infection that she was in the hospital for 3 days for. At that time they diagnosed her with Grade 2 and we decided not to the the prophylatic antibiotics dispite our doctor recommending them. We followed up 9 months later with another pediatric urologist. They did another VCUG and her reflux was quite a bit worse which is NOT Common. They said it almost never gets worse usually gets better as they grow up. We suspect she had several infections that we didn't catch because I didn't take her in for every little fever assuming she just had a normal childhood virus. I have since learned that with a child with reflux you have to take them in for every fever with no other clear cut symptoms. It is no fun but it really is best.

We are currently doing septra every day. Every 6 months we have to go in to our urologist for an ultrasound of her kidneys and every year we will have to do a VCUG. The ulrolgist said that if she hasn't improved in a year he HIGHLY recommends we do surgery. There are 2 types. One is rather simple and is called deflux. It is an outpatient surgery but the success rate is not as great. Our doctor said often times it has to be done twise to get the full result. The other one is much more invasive and involves a few days in the hospital but is much more effective. My cousin had that one done and my aunt said it was terrible. We hope to avoid it but Jaci has already had 2 breakthrough infections on the antibiotics so it doesn't look too good.

Our doctor said a lot of parents opt to do the deflux instead of antibiotics every day because they feel it is less invasive than an every day antibiotic. I opted to do the antibiotic for a year. We also give Jaci a probiotic every day as well as a cranberry supplement. There actually a pill called cranbiotic. If you choose to do the antibiotics I highly suggest you talk to your doctor about supplements.

If your daughter is too young to tell you something is going on you can usually detect an infection by a really bad smelling diaper. Jaci's pee diapers would literally run us out of the room and her clothes would smell like it even if her diaper wasn't that wet. We eventually learned that a lot of times when bacteria is present the urine will smell really bad.

Please feel free to email me with any questions you have. We go back in Feb for another renal ultrasound and will likely discuss our options since she has had the breakthrough infections. Just try to stay on top of it. I feel like my not taking her little fevers seriously caused her problems to get worse. Now we are at the lab any time there is a fever with no other symptoms.

[HIU8]

Both myself and my brother had reflux as children. I'm sure things have changed a lot since we were dealing with things. I didn't need surgery. I still get UTI's but not as often (but I have almost constant frequency and urgency issues and have to make sure I eliminate about every 2 hours). My brother lost 90% of one of his kidneys due to reflux. He had surgery at age 6 to re route his ureters to the one good kidney and that is how he lives today--I don't think it is an issue that needs constant watching anylonger.