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Urinary Reflux Disease in 18 Mo Old...

My 18 mo old daughter was just given medication for a urinary tract infection...we're lucky we caught it because she didn't have a fever or anything, but every once in a while (we only caught it twice) she'd grab her diaper and cry out. Well, I thought no big deal! She'll take an antibiotic and it'll go away. WELL, her pediatrician just called my home the other night and told me that most likely my daughter has Urinary Reflux Disease - where the body reflux's or flushes urine back up into the bladder and kidneys and left untreated can cause scarring and/or kidney failure. The doctor said that this is something she will most likely grow out of by the age of 5, but will need to be on a constant antibiotic until then in order to prevent infection. Does anyone know more about this disease, or know someone's child that has this and can maybe shed a brighter light on this for me? I'm worried that because we are just now catching it, and she's had this since she was born, that she may have damage already done on her little kidneys. We won't know anything more until the tests are ran next month.

What can I do next?

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I had this, but didn't grow out of it until college. You take a lose dose of an antibiotic everyday and you don't really need to worry about scarring until she gets an infection that hasn't been treated, so it's important to keep an eye on it. I would only get the test done if the doctor thinks it's really important to do (he may want to wait until shes older to do it in case she outgrows it). Email me if you want to know more about the test.

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A.,

I know nothing about this, but when I need to find some information to understand better any kind of health care issues, I like to visit www.mayoclinic.com and www.webmd.com. Often times these web sites can provide you with enough information to make a difference in your understanding of what is going on so it is all not quite so scary.

Good Luck, I hope it all turns out well for you and your daughter!

N.

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There are 5 stages to urinary reflux.. 1 is not so bad and 5 is severe and MAY need surgery to correct if they don't feel the child will outgrow over time. My daughter was diagnosed w/ stage 1-2 (urine traveled and reached the kidneys, but never entered the kidneys) urinary reflux when she was about a year old. She had one UTI and her ped sent us to Children's Mercy for an ultrasound and x-ray. Once it was confirmed, she started taking antibiotics (she took amoxicillan as she proved to be allergic to sulfa antibiotics, which was the preferred treatment). She is now 5 and has not had a UTI since that initial one. We even stopped the antibiotics about 18 months ago to see what happened. We have to take her to the dr whenever she runs a temp and they always check her urine to make sure she doesn't have a UTI, but so far, so good.

Just an FYI regarding insurance. About 2 years ago, my husband and I made some job changes and attempted to get private health insurance. My daughter (age 3 at the time) was denied health insurance by 3 seperate insurers based on her diagnosis of urinary reflux.. even though she had only one UTI her entire life!! We had a letter from her ped that supported that she was a healthy child, but even that didn't help. Fortunately, my husband was working for my father at the time who dropped his ins w/ my mom and took out group coverage for just himself and us, just so my daughter could have coverage. It was ridiculous!!!

This is very common and more than likely, your daughter will outgrow at some point. Also, there is a bubble bath by California Baby that is safe/doesn't lead to UTIs. My daughter loves it as it comes with a bubble wand so she can blow bubbles during her bath. You can find it online, Target or Babies R Us. It's expensive ($10+), so we don't get it too often, but it's nice to have the option!

Good luck!

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My very healthy 7 year old was diagnosed with it when she was 3 months old. We rushed her to the hospital in the middle of the night, and when we got there, her temp was 105. I didn't know it could get that high. She had a kidney infection, and she was tested for reflux immediately. It's diagnosed with an ultrasound (painless) and a VCUG. (Not so fun). She was on prophylactic medicines to prevent any further infections (which is what causes the damage and scarring) until she was 5. She didn't grow out of it. When she was 5, she had deflux surgery at Children's Mercy hospital (Kansas City, Missouri). It is a very non-invasive surgery where sugar deposits are left at the base of the uretha tubes with the idea they will harden and put pressure on the valves and cause them to close during voiding. In our case, one side was corrected 100 percent, and the other side, almost 100%. It's noninvasive, and she went home that day. They go in through the vagina. We had a follow up one year later, and she was doing great. Another friend's daughter had the same thing, and she was scheduled for surgery to go in and cut her open, cut the tubes and replace them. It was totally invasive, with 6 days in the hospital and of course, a lengthy recovery. We told her about our surgery, and they decided to try it first, and it worked great. While you obviously don't want to get to this point, I am telling you about our experience so that you will know that it is very treatable, and considering all the other things that can go wrong with a child, this is something that you can deal with. I also know 3 other people whose chidren has this, and they all grew out of it without surgcial intervention. If you want more information, let me know.

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I had this same thing when I was 4 years old. I was on 2 different kinds of medications till I was 9 or 10 I think. But it is something she will outgrow. And If she does have it, there are several thing you need to do to lessen the symptons. No bubble baths. Use very mild soap. I know kids love baths, but keep the bath time down to a minimum to keep any soapy bathwater from entering the urinary tract. Lots of juice and water. No caffeine. And no wet underwear or diapers. Having this, she will be a bit more susuptible to yeast infections. I am 31 now and have minimal kidney damage from mine. But I can always tell when I am drinking too much pop or tea cuz my kidneys let me know! Good luck!

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I had this, but didn't grow out of it until college. You take a lose dose of an antibiotic everyday and you don't really need to worry about scarring until she gets an infection that hasn't been treated, so it's important to keep an eye on it. I would only get the test done if the doctor thinks it's really important to do (he may want to wait until shes older to do it in case she outgrows it). Email me if you want to know more about the test.

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You might consider using cranberry extract to help prevent UTIs in your daughter. I don't know about your daughter's condition but cranberry helps to prevent the bacteria from sticking in the bladder and causing the UTI. You can find chewable cranberry tablets since your little one is young or I think they make liquid cranberry extract also. You could also try the juice but usually it is sweetened with sugar which negates the good effects as it needs to be pure cranberry juice and then it is really bitter. I give my four-year daughter a cranberry tablet everyday as she had a UTI and so far she has not gotten another. Also, I would consider seeing a chiropractor. They get amazing results with manipulation of the spine and could possibly improve or cure the problem. I would be very concerned about using antiobitics all the time for that long. I did that for years and it will mess up your dauther's body as it did mine. It wipes out the good bacteria and will create new problems.
There are many good chiropractors but if you would like to check one out I will list ours below. I take all my kids to see them when they are sick.Hope she gets better!
Cardin Chiropractic
www.cardinchiropractic.com
###-###-####
9159 W. 133rd
Overland Park, KS 66213

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Hi A., I just recently learned about this myself. My giirlfriend here at work has the same problem with her granddaughter. Everything that you said in your blog is what she just told me. Hopefully they will grow out of it. Apparently it's not all that uncommon in little girls. She said that her urethra (i think that spelling is wrong) tube isn't as long as it should be. Over time as they grow hopefully that will grow too. If it does not catch up with her body later on, they will go it and make her a longer tube. Apparently when ever she does urinate alittle urine will retract upward back into the bladder. She said that every three months or so they have to take her to the hospital and draw blood, take a urine sample and do some type of xray to check on this problem. Her doc said it's not uncommon for this to happen. I don't know if i've shed much more light on this conversation for you or not, but i hope that i've helped answer your question alittle bit. She tells me to tell you not to worry to much about it (I know, easier said that done), but it's not anything too terriable. Good luck with your baby girl! Mother hood isn't easy that's for sure! Good luck with your little girl!!!

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I had two friends whose girls also had urinary reflux. One was diagnosed as an infant and the other at age 3. They had both outgrown it by age 5. I do know that one of them took an antibiotic called Septra(Bactrum)to help prevent UTIs.

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My son is also 18mo old. He does not have the Urinary Reflux Disease but does have reflux in his kidney due to a UPJ obstruction(his drainage tube from kidney is narrowed and is now causing it to backup in the kidney). are you talking with a urologist? I don't know where you are or what insurance you have but ours is great. His name is David Anderson in Ferrell Duncan Springfield, MO(Cox insurance). They found his when I was pregnant. The lady that told us didn't know what she was talking about. She told us it was polycystic kidneys so I was actually relieved that it was his current problem.
Sorry I'm talking about my issue so much, back to you. I just wanted to give you some encouragement on the test. I don't know if it will be a renal scan like ours but the worst part, if it is, is having to watch them do the iv. I wouldn't worry too much until you get the test results. of course the waiting is terrible. there is always something they can do to fix things. mine will be having surgery soon. he has lost 10% of his right kidney function in a year but like i said, it is a different problem.
I would just be thankful you caught it now so further damage can be prevented. I'll be praying for you.

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My daughter was diagnosed at 18 months also (Feb 2008). She is on antibiotics daily as well. So far, no more UTIs. We go back in Feb for more testing to see if anything has changed. It was very scary for us as well in the beginning and we still worry anytime she doesn't seem herself. However, I have come across several children who have had it. Hang in there - no one wants anything to ever be wrong. Also, not sure if this is common or not but our daughter was very tramatized by the procedures/tests. It took MONTHS for her to let us really wipe her well without crying. So, be prepared in case that happens to you as well.

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A.,
My daughter's pediatrician was convinced my dtr had the reflux as well (she had a horrible kidney infection). My understanding is there are varying levels of severity and that can also mean that it might mean she will outgrow it sooner. We had the battery of tests (ultrasound on her kidneys and then the flush using the catheter. It was negative and turns out it was just a bad one time infection.) I am sorry I can't tell you about the treatment, but I also wanted to let you know there is a great possibility she doesn't have it. I will tell you that the test where they insert the catheter and the dye is pretty painful. If your husband can be there with you I would advise it. My husband and I were able to be there together and I think it helped us all get through it a little better (my dtr was not sedated as she was too young to do so)
Please keep us posted. I am sorry you have to go through this.
E.

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Hi A.,

My daughter was diagnosed with urinary reflux when she was only 4 months old. She had a urinary tract infection they caught when she went to the doctor. The doctor said at that age, the most likely cause of the infection was urinary reflux. From what I understand, it is when the valves in the the urethra are not completely formed and do not close properly and some urine then flows backwards to the kidneys. My daughter was a preemie, so it is not uncommon for premature babies to have this issue. I was also worried about kidney damage. We went to see Dr. Coplen at Children's Hospital to do a test that tells you the percentage of urine that is traveling back to the kidneys. Katie's was mild, only about one to two percent. They put her on a low dose of Bactrim. They did the test again a year and a half later to see if she had any improvement, and she had grown out of the problem, and she is no longer on the antibiotic. So having the test done will tell you a lot about your daughter's condition and how long she will need to be on the antibiotic. Please note that my daughter was extremely uncomfortable during the procedure, and it was very hard for me to see her so upset, so just be prepared. Good luck!

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Hi A.,

I have a daughter who had gone through a lot of kidney problems. The first thing I would do if I were you is to get a referral to a pediatric urologist. The only way to really diagnose urinary reflux is through special x-rays. The urologist would be able to order those. I don't know if you are close to St. Louis, but my daughter sees Dr. Paligiri at Cardinal Glennon. He is wonderful and very thoughtful. Good luck to you!

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Hi A.,
I have a daughter, now 11 yrs old, that had Urinary Reflux as a baby. It was diagnosed when I was pregnant with her several months before she was born. She has grown out of it and has never had any problems related to it that we are aware of.

From what I remember she had one ureter attached to her kidney a little unusually (presumably it still is) and the other was just smaller in one area than it should have been, therefore the urine was not staying in her bladder as it should and was backing up into her kidneys. We were told that she would probably grow out of it and were told when she was around 5 or 6 that she had.

We gave her a very low dose of amoxicillin every day for the first few years of her life, this was just to prevent any bacteria from growing in her urine. If I am remembering correctly it is really ok for the urine to be in the kidney as long as it does not have the bacteria in it from an infection, because that's when the kidneys get damaged. We had to be very aware of any fevers that she had and to be ready to take a urine sample to the drs. office for testing, they wanted to make sure that it was not a urinary infection that was the cause of the fever. (In her case, it never was) We had our final urologist appt when she was around 5 and they said no kidney damage. I am hoping that it will never again be something she has to worry about.

She does seem to have a resistance to antibiotics and I wonder if all of that amoxicillin as a baby may be why, but who knows. I worried about giving her the antibiotics but if it kept her kidneys from being damaged it was worth it!!! She is a healthy kid and rarely is sick but occasionally she will get something that one dose of antibiotics won't kick and she'll need one more round of something more potent. (She has had an allergic reaction to Septra so we don't give that to her anymore) But otherwise I have not noticed anything else related to this issue.

She did have a lot of testing over the years, ultrasounds and tests called voiding cysto-urethrogram (sp?), done at Cardinal Glennon in St. Louis, we had a ped-urologist named Dr. George Steinhardt, that was very thorough and did a great job explaining to us what was going on with her. We were so worried about her, I wish I had had a source like this to ask questions of others at that time! If you have any other questions for me please feel free to send me a message. My best wishes for your family.

L.

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A.,
My daughter was diagnosed with the same thing at about the same age. She was on Bactrim for almost 3 years give or take a few months. It just became routine...no big deal. She had improved after that when retested, but it wasn't totally cured. She went from a 4 on one side and a 5 on the other (5 being the worst)to a 3 on one side and a 2 on the other. They discontinued the antibiotic, which scared me, but they were convinced that it was under control enough, and that she didn't need the antibiotic any more. She is now almost 9, and she has had NO problems since then! :)
Good luck...I'm sure she is in good hands!

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Hi A.: My 6- yr old daughter has reflux as well (due to a birth defect) and it's really not a big deal. She is on Macrodantin and her urologist does a yearly ultrasound of her kidneys and a test called urodynamics (also called VCUG) where they test at what pressure the urine starts backing up. Apparently others have said it is painful?, but my daughter has no sensation in her vagina, so for her it is easy. We see Dr. Coplen at Children's Hospital and he's fabulous. I'm wondering how your ped. suspected reflux from just one UTI? However, in terms of damage possibly done, there are different levels of severity to reflux, and so it's very likely she has a low-grade level and hasn't really done much damage yet. I wish I had more help for you now, but the tests they run will give them better info. Good luck! Any more questions, just ask!

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