Uti and Catheters

Hi S.!

I have two daughters, 4 years old and 13 months old. Both have kidney reflux and have been on antibiotics for over 6 months now. I know how you feel. Actually, both of them have made it through the flu and other seasons without getting sick!! There are some bonuses to it and the antibiotics are such a light dose that it will not affect them long term!!!!

I second the probiotics. Open a capsule into cereal or food every morning.

My daughter was diagnosed with this at birth (they found it when checking for other problems so luckily she never had a UTI). She was put on antibiotics and we went to a pediatric urologist (I highly reccommend Dr. Jeffrey Pugach with Cook's Children's network, but it does take several months to get in usually). He said I could keep her on antibiotics until she grew out of the condition(usually happens by age 5) and test her each year (meaning more vcug's) or have a procedure done to correct it. We chose the procedure but had to fight the insurance company to get it. By the time I won the battle (13months)by providing tons of research on the procedure and negative effects of long term low dose antibiotics, she grew out of the condition and no longer needed the medicene or procedure!
It is very important to treat the condition either with antibiotics or the procedure though. It can damage kidneys, which can cause life long hypertension and an inability to safely have her own children among other complications. If you want to see the urologist call her dr. and ask them to set up the appt or give her a referral. If you end up needing any of my research please email me. It is my understanding that most insurances now cover the procedure.
The urologists info is on www.uant.com
The procedure is called deflux and is an outpatient procedure done in the hospital (she will have to be completely asleep), but she will be home same day. She would need to have another vcug a few weeks after the procedure to assure that it is fully corrected before taking her off antibiotics. They basically go in and put a special mesh on the ureters to prevent urine from flowing back up, but it is NOT a surgery because there is no cutting, they go in just like they would with a catheter using special scopes.

Kidney Reflux is serious. My 11 year old cousin had to have a kidney transplant last summer because this type of reflux went un-diagnosed for so long that both kidneys failed completely. A transplanted kidney won't last nearly as long as she will live, and there is a limit to how many donor kidneys you can implant because the whole process is so tough on the body. This precious little girl has a very complicated future, with a significantly decreased life-expectancy because the kidney infection was missed for so long. You're lucky to catch your daughter's reflux now.

Good luck,
S.

My daughter had kidney reflux which she eventually outgrew. We did have her on the antibiotics for a year. She is now 6, and it has not made her resistant to anyother antibiotics. Kidney infections are very painful in the back and when peeing. Which is worse? Antibiotics or constant pain and might lose kidney?

There is another way to collect urine instead of a catheder. There is a bag they can attach to her by some adhesive (not strong). And put the diaper over it. Drs don't like to do it because it takes too long to collect the urine.

I personally had reflux as a young child. I know the tests you are talking about, we had to do them with our daughter at three months of age to rule out any problems. I can assure you that the year of meds will in the end be well worth it. I had the all the procedures to fix the problem and now have no problems. I know it is hard for you, but she won't remember. The drs. will only do the min to keep her well. Good luck. You will be in our prayers.

Hi S.,
I've not had any experience with this problem myself.

The only advice I can give you is to get a SECOND opinion as soon as possible, so that you don't start her down a particular path that is unnecessary.

If both doctors agree, then there's your answer. If they disagree, then get a THIRD opinion as the tie-breaker!

That's the approach I would follow.

Best wishes to you and your daughter!

Hi S.. My daughter was diagnosed with this same problem when she was a little over 2. She only had the reflux on one side, and our pedi said she would most likely eventually outgrow it. She was on antibiotics for two years, but she is now 6 and hasn't had any problems at all. She had to have the xray/dye test once per year to monitor the reflux. She was on a low dose of amoxicillin - taken every night before bed. A benefit of this was it even helped keep her from getting all the of the stuff, strep, etc. that always seemed to be going around. After having gone through this with my daughter, I agree with all of the other mothers, the year or so worth of antibiotics is a small price to pay for avoiding the possible kidney damage. If you have any questions, please feel free to e-mail me at ____@____.com - best of luck to you and your daughter!

S., my daughter has urinary reflux that was diagnosed at about 18 months. Fortunately for us, an older cousin had been diagnosed, so I was able to get her treated quickly. We've been on Sulfatrim since then; my daughter is almost 6. While I'm not sure that's the right course for you, her rating has decreased from 3-4 on both sides to less than 1. At our last visit about a year ago, our pediatric oncologist was pushing the Deflux procedure even though we'd seen significant improvement; the people who did her VCUG in fact thought the problem was nearly gone. We decided to wait for another year with the guidance of our pediatrician; we both felt like the oncologist was possibly recommending Deflux inappropriately.

So, what does that mean for you? First, I would not panic about the Sulfatrim. You can get it for $4 in the easiest bottle to use at a Target pharmacy. She's not been exceptionally prone to any other illnesses, and the two or three times she's been sick, other antibiotics worked just fine. It's part of our bedtime routine, along with brushing our teeth.

I hope that helps. Let me know if you need more information. You have to do what's right for you, but I think that the small dose of Sulfatrim and its side effects are far less damaging than any kidney issues that could arise.

S.,
First, I feel for you but it's going to be okay! My daughter was diagnosed at 2 months b/c an older cousin had it and I had mentioned it to my daughters pedi in passing. She had level 4 reflux on one side and level 2 on the other. VCUGs and Renal sonos are no fun but it's a good thing you did it. We went thru that a few times My little girl was on antibiotics for about 18 mos and had reimplantation surgery to correct the issue. (She had 5 or 6 kidney infections by the time she was 16 months.) Get a good pediatric urologist to check your daughter out and provide alternatives. I highly recommend Dr. Ewalt-he's absolutely wonderful.

Keep in mind your daughter's diet-yogurt for pro-biotics, organic milk, 100% cranberry juice, asparagus. Good luck to you and let me know if I can answer any questions. It definitely helps to talk to someone who has been thru this.

S. - I know this is hard to deal with - especially when its your child ! Anyway - my 4 year old was born with urinary tract issues. Not reflux though. He was put on an antibiotic at birth and was on it for a year to keep him from having the uti's. In my opinion it was better to be on the antibiotic for a year than to have the uti's. And it was so simple to do. The uti's can cause a lot of damage to her system. Your pedi was great though in running the tests and finding out the cause before she had more uti's ! Feel free to send me a PM if you have any questions.

Hi S.!
I believe that doctors are doing what they can. I would get second opinion from another doctor. Check alternative options. Learn what food is bad for kidney. You could do so much for her with proper diet. All colorful drinks are bad. No soda, junk food and more. I have few friend that using special nutritional supplement for kids with amazing results.
Bless you!

Not really. Reflux means that urine goes back and forth between her bladder and her kidneys, whereas it's only supposed to go down. That means that ANY infection in her bladder (normal UTI) can be carried easily back up to her kidneys (nephritis) = scary high fever and pain that rivals labor. Repeated bouts of nephritis can lead to kidney failure.

I'd put her on the antibiotics and not look back.

Hey S.
My friend's daughter had similar problem when she was 2 months old. She was on the antibiotics for a year too & is now a healthy 7 yr old. No more issues with the reflux or UTIs. If you feel uncomfortable about it, you can always go in for a 2nd opinion. Doesn't hurt. But the antibiotics is the best way to deal with the reflux problem. God bless you & your family.

We were on sulfatrim for about 8 months before we opted for surgery. She had stage 4 reflux on one side and stage 5 on the other. My then two year old continued to have infections even on the antibiotics. We saw a pedi urologist in Arlington. He used the "deflux" surgery when she was a little over three and a half. We still watch her closely. She is now almost 8 and only had two or three infections since her surgery. There is/was a great website for the deflux that even had a cartoon for her to watch that helped ease her fears about the surgery. I think it was simply defulx.com, but google should find it if it is still live.

At this point the hardest part is to make sure all her teachers know she has frequency and urgency and she is not trying to cause trouble, she just has to go :)

Good luck and feel free to email if you have any other questions.

P.

I do not know anything about this particular condition, but would recommend you seek an appt with a nephrologist (kidney specialist) if your daughter's kidney is in danger of being lost! That way, you can be sure you are doing everything you can to protect it. Your pediatrician may have already referred you to one.

Hi, S.,
I don't know anything about this and my heart goes out to you. But I do know if she does take antibiotics for a year then I suggest giving her probiotics to replace the "good" bacteria in her gut that will be lost with all those antibiotics. You can get it in the good yogurt. not the "fun tasting character" ones. The ones that have the five to seven live cultures in them. Like Horizon yogurt. Hope this helps.

I had this condition as a child, and although you never outgrow the reflux part of it, you do become less susceptible to the infections. I did antibiotics for longer than a year (but that was almost 30 years ago, so, the drugs have come a long way!). The only thing you'll need to watch for later on is she may become allergic to the antibiotic that she takes now. I took the antibiotic Bactrim for 4 years straight, then on and off again until I was 16 (just when I had an infection). It wasn't until I was 16 that I became allergic to it, and now I can't take that type of antibiotic at all. Give your daughter the antibiotics now - it is not worth the risk of having larger problems later on in life.

S.,
let me just say my heart goes out to u in this situation......we i was 6 yrs old i starting having kidney problems.....i had severe reflux and my urthra leaks urine into my body....causing me to become septic......i have had more uti and bladder infections then u could imagine.......my dr suggested we take the antiboiotics and see if i would grow out of it....3 days after my 7th birthday i had to have surgery becuz my dr didnt want to risk me getting anysicker..........since then i have some problems but not as bad....i have to be very careful about the amount of soda i drink and make sure i drink alot of water and cranberry juice........i still get kidney infections just not a bad and painful or as frequent as they us to be............so its kindof a desision you have to make.....and my parents seeked a second opinion and that dr said that my dr was rediculous and was wrong.....but becuz my parents trusted my dr and didnt want to risk it they ignored the second opinion...and boy am i thankful for that........

My daughter too had urinary reflux and was on antibiotics for a year. The only other advice i'd give is to have her eating yogurt everyday, it puts in what the antibiotic takes out. My daughter did outgrow it, she was 12 months and has got tested every year after, she is now 3. Good luck!