Advice on Vesicoureteral Reflux and Daily Antibiotic

My 9 monhth old daughter was diagnosed with VCR when she was 4 months old. She has been on a daily preventative dose of antibiotics since then. At first I was very nervous about putting her on an antibiotic every day but I have not seen any negative effects so far. I asked several of the doctors at Metro Peds about this and all have been in favor of using the antibiotics because it is so important to prevent infections. I don't have any specific information for you, but after 5 months of treatment I haven't had any bad results.
What other treatments have been offered to you?

While I don't have any current experience with this, I thought I would post as I myself had surgery for VUR when I was 3 years old. Mine showed up as I started to potty train at age 2. I remember (& my family has told me too) how very sick I was with high fevers from bladder & kidney infections, & how miserably uncomfortable the UTIs were for me. My parents went ahead & had the reimplantation surgery done on me (they probably didn't have the Deflux I've seen mentioned here at the time) because they & the MDs were afraid that I would suffer permanent kidney damage from the repeated infections (which I had even on prophylactic antibiotics). I remember much of the pre & post hospital stay, going into surgery, etc. I remember being in some pain (mostly during an IVP & with they inserted a catheter) & a little scared, but overall it was sort of a 'fun' experience because I got lots of presents & attention! I had a few more infections in my late teens & early 20s, but none since then, no trouble with scar tissue/adhesions, etc., so a good result.

As a nurse, I cared for a woman that was diagnosed with this in her 40s! They surmise that she had it all her life as she did have fairly frequent UTIs, but no one figured it out until then.

Hi Meredith-
My daughter, who is now 14 months, was diagnosed with VUR when she was just 2 weeks old. Stage 3-4 on the left side. After recovering from her initial kidney infection (when we diagnosed the reflux), she was put on a daily antibiotic for almost a year. At that time I had read all the medical literature about the controversy of daily antibiotic prophylaxis, and how they weren't finding much of an advantage for its use. (I.e. the infection recurrence rate for those using a daily antibiotic versus those who were not was virtually equal). But I decided to go ahead and do the antibiotic anyway, and here is why: my daughter's AGE. For a four or five year old to get a bladder/kidney infection, it is not that big of a deal. They can tell you immediately if their tummy is hurting, they are having trouble going potty, or their pee pee is burning. You can get them in right away, do a urine culture (without a catheter!), and get them treated. A baby can't do that. Young babies can't tell you if they are upset because their teeth are coming in, they are tired, they have ear pain, or have a raging kidney infection! I didn't want to be second-guessing every time my daughter was particularly fussy or was having a rough day. But I didn't want to hold off from taking her to the doctor either since even a small infection can lead to kidney damage which is PERMANENT! If we could prevent even ONE big infection (and potential hospital stay) with a daily antibiotic, I figured it was worth it. Besides, the amount she took was very, very small-- hardly much of anything. We experienced no side effects either.
Things were very uneventful for about 8 months, but then she did end up having two break-through infections (even while on the antibiotic!), which they said was pretty unusual. So at that time, I requested they get her in for surgery as soon as possible. The previous infection had been a very weird bug that is resistant to tons of stuff and that totally freaked me out! So in October, at 10 months old, she had the uretural reimplantation surgery performed at Children's Hospital in Iowa City. Everything went very smoothly, and we only had to spend one night there. The day after we went home, she was up and walking around again. We continued the Bactrim for an additional 12 weeks while the bladder was healing. But now we are totally done with everything, and never have to worry about VUR again.
As for alternative therapies, there really aren't any. I had asked about taking cranberry juice and yogurt, which is full of pro-biotics. The doctors encouraged me to give these to her because they are good for her, but not because they prevent infections associated with VUR. Incidentally, she was taking yogurt every single day when she had the break-through infections.
Hope some of this helps. I am sure you will make the best decision for you little boy, whatever that might be. Feel free to email me at ____@____.com if you want to know more about our experience with VUR.
~ C.

Hi, my daughter is now 3, diagnosed about 10 months old with VCR stage 2 on both sides. She's been on Macrodantin since she was diagnosed. She has a voiding cystourethrogram (VCUG) once a year to see if she's outgrown it yet and to see how her kidneys are doing. She had one breakthrough infection at the very beginning of treatment, and none since. The first infection was very scary with a really high temp and she got so sick, I was grateful just to have a treatment option that would keep the infections away. Now that she's 3 and potty trained and able to tell me about her own body, we're tempted to stop the antibiotics and see how it goes. She has not outgrown hers yet, but the doctor remains optimistic that she may since she's a lower grade. He also said there are studies right now trying to determine whether antibiotics are actually needed to prevent the infections, but that this is what he recommended to us now. Good luck with whatever treatment you choose! I'm interested to see if anyone has alternatives that has worked for them.

Hi, I have an almost 10mo old daughter on her now 2nd uti.. Yesterday she had her preocedure and found that she is a grade 4-5 on her left and a 1 on her right... I still dont know what the urologist is going to to from here since we havent met w/ anyone about it yet.. BUT, I do know that it is a very good thing that my daughter, Lily, is so young and too young to remember any of this! She has this because of me... I also had severe problems with this as a kid and again a few years ago. I dont remember what grade I was at, but apparently it wasnt as bad as hers. For one, I DO know that I will not let them get away with just telling me that they are going to put her on antibiotics and wait it out! Long term antibiotics will do more damage in the long run than not! At the same time, I dont know if any of you have ever had these tests done yourself as a child or have had to go through the excruciating pain of bladder/kidney infections..I have and I CRY for my daughter when i see her in pain! When it goes from the uti to kidney infect you cant move!! I would compare it to giving birth! And trust me, I had twins! An 8lb'er and Lily at 6lbs 2oz! When i was a kid i had so many of them I have major scaring on my left kidney... I ended up having I believe the gel..I cant remember I was too young and I havent recieved my medical records yet to find out..But if they offer that to us as an option vs surg or antibiotics, then I am definitely doing that!! I was knocked out for that and just remember finally being pain free!! So, for those of you who have the option of doing the gel, DO IT! For your childs sake! Dont just say, oh, if he/she only has 1-2/yr, then we're ok...NO, its not! Its not ok when your child is put in that kind of pain when it can be totally avoided! Also, those infections that they are gettting is adding to the damage to their kidney's! Each time they have one!! The procedure isnt as invasive as you'd think... They've already been cathed, how many times now?? They wouldnt even be awake for it! I cant even imagine how long my little girl has been in pain with all of this and has fought through it and cried and we just thought it was collic!? Id rather her have had that!! I cant tell you enough, try the gel... For your childs sake! I know Im going to try and get that!
Sorry about any misspellings, on my iphone which sux for spelling and no time/patience to go back and proof read!lol
Good luck to you all and I hope everything works out for all of your babies!!:)
BTW, so WHY does this just seem to be a MN thing?? This site isnt just a MN site is it??
Also, Im in Duluth and just went to St. Lukes here in town for all my stuff as a kid and adult..and it worked jsut fine.. Like I had mentioned, after the gel I hadnt had another UTI until I was like 27-28yrs old... I am 32 now and havent had one since then..I only had the gel done as a kid..so, Ive had over 20yrs of success w/ the gel and only had the one UTI/kidney infect in my late 20's and nothing since..so, it works!:)
Sorry about he novel!;)
Emily

Hi M.,

I have no idea if this would work for your son, but we have nutritional supplements for children that provide a 95% absorption rate into the body. It has helped children with kidney infections, and diabetes, and builds the immune system.

We also have a cranberry supplement that is a chewable that might be helpful. It is used for urinary tract infections. We have seen a lot of success with these products.

I have 17 allergies to prescription meds. Mostly anti-biotics. That's how I found this compnay. The last med the doctor's gave me for my Crohns gave me drug reaction hepatitis. I told my doctors to start looking for a natural replacement. I found it literally by accident. I have been in remission for the last several years! No antibiotics!

The company I represent does have a natural anti-inflammatory. It's a little more pricey. I don't know of any moms using this product for the reason you are talking about. But we do have moms that are having a lot of luck with children with allergies, asthma, autism, and more It comes a s ac apsule and most of the moms just sprinkle in their applaesauce or put it in their juice. My friends daughter used to visit the hospital at least two times a year for kidney infections. Ever since she switched her shopping habits, (knock on wood) their little girl hasn't had an episode yet.

Think about it. If you're interested in learning more, we can set up a time to share more. Please e-mail me at ____@____.com or call me at ###-###-####.

J.

I am not sure what vesicoureteral reflux is... but I am VERY familiar with the Children's hospital staff. Work with your doctors as they are their for you and your son. Ask them why antibiotics and for how long and bring in your research. You have to becareful on what you read and while some is valid..they should be able to bring more credibility to their solution. As a mom who spent 3 mo. in the NICU with her son there... I am guessing at this stage and given that your son is so long they are most concerned about infection. For babies infections are in some situations life threatening and does effect developement and the brain if bad.... all things which you might know... but again. Ask the doctors... challenge them and if there is a solution you want to try... ask if they can try your way for a while (again I don't have a clue what you are dealing with here)... but most if not all the doctors I worked with were very receptive of the parents involvement. Good Luck and prayers!

My daughter was likewise just diagnosed with stage 2 on both sides. We ARE opting for the daily dose of antibiotic. The Dr. offered one other course of treatment as an option, though. It is called Deflux. It is a gel that they insert via scope (so it IS a sort of surgical procedure, but no incisions) near the valve so that the tube bulges to allow the valve to close properly. This gel dissolves within 5 years or so and the tube goes back to normal. Our thought was, if it STILL has to essentially resolve itself within that 5 years or so, we are going to give it a chance to do that on its own, without the gel, first. Are you in the Minneapolis area? If so, I highly recommend Dr. David Vandersteen, pediatric urologist. His office is right next to Children's Hospital Minneapolis. Good luck! And don't worry--the more we have talked to people about this, the more we have realized how common it is and most children DO just "grow out of" it.

Hi M.

Please go to my web portal at marketamerica.com/dherber and scroll down on the left had column to "ten most popular products" and click on "Ultimate Aloe". When this opens up you can read up on an abundance of info on the product. Also click on the little video icon with "view demo" and a short video will explain the product. Ultimate aloe has over 200 nutrients and I would definitely try it first if it was me over an antibiotic daily. That will totally suppress his immunte system. Of course you will want to check with your doctor.

any questions, email me at ____@____.com

I think you should go on the daily treatment so it wont get worse but you should look up on the treatment they give you

My girl has the same thing (level 2 or 3 depending who looks at her exam). We were told to take an antibiotic for prevention but in discussion with the dr turns out this isn't a sure thing anyway so we didn't. She had a couple of UTI infections which is how we found out there's something wrong.
We do not give her antibiotics rather we do a urine culture each month to make sure there is no infection. Also, any time she has a fever we do a urine culture even if we have identified the cause of it. For example, if she has an ear infection we will do a urine culture as well since we've noticed that when she's unwell it's more likely for her to have a UTI as well.
This started when she was 6 months old. As time goes by she is having less and less UTI. I think not one since she was 12 months old.
I'm glad we didn't take preventive antibiotics. It's such a strain on anyone's system, much more on a baby's.
Hope this helps.

Hello M..

My daughter was diagnosed with VCR also, but not until recently and she is 2-1/2. She is a "high" grade III on her left side. She will have to have surgery on April 8th. She is on prophylactic antibiotics to keep away any infections, since she already has had two cases of serious pyelonephritis (infection of the kidney). Her urologist will be taking a look at her bladder on surgery day and decide from there if she is a candidate for Deflux (less invasive procedure to correct VCR but only 70% effective) or full-blown surgery (98% effective) which involves a uriteral reimplant surgery. They literally remove the ureter where it currently is and reimplant it to a different part of the bladder. VERY INVASIVE. A week hospital stay, 3 inch "C-section" scar, bladder cut open, etc. NOW, from my research, a lot of Grade I to II reflux cases children grow out of. But you don't want to risk the chance of a kidney infection due to long term renal scarring and damage, therefore prophylactic antibiotics are recommended treatment. You're right. This is very controversial. I am a Clinical Lab Scientist in the microbiology lab and I UNDERSTAND the implication of long-term antibiotic use. Maybe you could talk to your pediatrician about Deflux? It's a simple outpatient procedure, no full blown surgery. From what I understand, boys are not as "apt" to "grow out of" reflux than what girls are. NOW, that may not be factual, that's just what I have gathered from people I have spoken with that have had children with the same condition.
Sorry this got "wordy", but I hope this helps!

I am also 29 and the mother of a 21 month old boy with vesicouretal reflux grade 2 both sides. He was diagnosed at just shy oof 4 months when he had a kidney infection as was at childrens minneapolis for 4 days. He takes the preventative antibiotics. We are not too sure about that either but it was the best option. He was retested once and hasn't outgrown it yet. If he hasn't outgrown it by hos next test, we may look into the surgury. My doctor did NOT mention this gel thing (I will have to reread the other responses and write down the name of that). But anyway, we haven't seen any indigestion or other side effects (except staining on the teeth that will come off with cleaning). He has not been sick since except for colds. I hate it every time he gets a urine culture done. He's uncircumsized and sometimes the nurse doesn't know what she is doing. I always ask for the most experienced. It shouldn't hurt except for a moment. Anyway, not much advice but we seem to be in a very similar situation so if you want to chat about it, send me a message. ~K.

My 10 month old daughter also has VCR. She has a grade level four on one side and a grade level two on the other. It's actually really common in my family and most of my nieces and nephews have had some degree of it. Lily, my daughter, has been on a daily antibiotic since she was a month old in order to prevent bladder infections. She hasn't had any problems with it at all and it seems to be going quite well. I wouldn't recommend the homeopathic remedies (cranberry pills, etc.) for your son as they aren't regulated the same as prescription drugs and what is considered safe in those is meant for adults and can cause problems in children. If you really don't want to use the antiobiotic on a daily basis, discuss it with your son's doctors and see if they can recommend an alternative. For us, I think the antibiotic has been a good thing. Lily hasn't had any ear infections, bladder infections, etc, and is perfectly healthy. But it really is up to you and what you're comfortable with. Your son's is relatively minor and most cases of VCR go away as the child grows. I know with Lily, they'll retest her each year to see if it's getting any better. Not to scare you, but one of my nephew's has chronic renal failure because of VCR (his was a severe case and he only had one kidney to begin with). So it is something to keep an eye on.

I wish I knew more about this. I had to do the last resort and go to Web Md to find out what this was. So, unfortunately, I only have the doctor-fed information about antibiotics in my head. However, I do know that if your child does end up going on antibiotics, watch for indigestion, etc. A little acidophilus, probiotic, or even apple cider vinegar (which I doubt your kid will take) will help with that in the future.

My son had reflux on one side and a blockage of the ureter on the other side. he was on antibiotics from birth til he was one yr old. he only had one UTI the entire time. I definately agree that over the counter herbal supplements should be avoided for this since they are not regulated. My son sees Dr Shukla at the U of MN and he has been very supportive and knowledgeable about the issue.

Good Luck.