Anyone Else Have Kid(s) with Urinary Reflux?

Updated on June 10, 2010
A.S. asks from Lockport, IL
14 answers

I have a 19 month old daughter and 4 month old son and both have Urinary Reflux. My daughter has grade 4 and my son has grade 3. I'm wondering if anyone out there has dealt with this reflux before? Has your child(ren) grown out of it? Had surgery? Had the "procedure" Deflux performed? Both kids take an antibiotic everyday to keep them from getting UTIs, but my daughter has had two UTI's while on the antibiotic. Just wondering if anyone else has had to deal with Urinary Reflux with their children and how you are dealing with it (or dealt with it). Thanks sooooo much!!!

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S.T.

answers from Chicago on

My youngest daughter, now 4, developed a fever of 104.3 while we were on vacation 2 years ago. We were in DC at the time, and they found out she had a UTI. My peditrician recommended we take her to Edward to find out if she had reflux-and she did-stage 3. Luckily, she did not have to suffer through multiple UTI's before being diagnosed. She was on Bactrim for a year. It constipated her, so we had to give her nectar juices to allow her to poop. After a year, we went in for a re-evaluation and everything was cleared up. Thank goodness. I will tell you that I was extremely nervous that whole year and did not want to get the re-evaluation. But everything worked out just fine. I wish you the best!

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T.C.

answers from Chicago on

I would consult with a physical therapist who specializes in pelvic/urinary dysfunction.

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J.W.

answers from Chicago on

Definitely look into food and environmental allergies as a cause. In the book, Is This My Child? By Dr. Dorris Rapp a pediatric allergist states that allergies can travel down to the bladder causing bed-wetting, urinary reflux and such. the bladder is reacting the same way to when allergies travel to our nose...we sneeze. And now that they are both being treated for antibiotics, they really do need a good probiotic to combat the good bacteria the antibiotics is killing in their systems. If gone untreated, it can lead to major food allergies, eczema, asthma, hayfever as well. I have an article in one of my columns about the benefits of probiotics. I highly recommend getting the book by Dr. Rapp www.drrapp.com

Good Luck.
J. W. MPH
Maternal and Child Wellness Educator
Chicago Examiner Family Health Expert
http://www.examiner.com/x-7158-Chicago-Family-Health-Exam...

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C.G.

answers from Chicago on

My daughter has this too. She was diagnosed after a high fever at 7 weeks old. she has bilateral grade three and grade four but thatnkfully no problems with the kidneys. she is now almost three and will be reevaluated in the fall. i pray that it is gone. she has been on bactrim with no other infections since the first. she is now potty trained which i worried would be a problem, but it was not phew! there is a great group on baby center that will answer any questions you have and uriology.com is a good site too. if you cant find the babycenter group email me and i will send you a link. best of luck!

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L.W.

answers from Chicago on

Hi A.,

Yes, my 15-month old daughter has urinary reflux - Grade 3. She has been on 1 tsp. amoxicillin since she was 3-months old. Luckily we haven't had any additional UTI's since she was 3-months. I am having another baby in 4-weeks who will be tested immediately for the reflux. We are doing a re-evaluation of our 15-month old this summer and will see if she has grown out of it or not. Has your daughter been re-tested? Hopefully my girl has grown out of it - I hate seeing her go through the VCUG test.

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E.A.

answers from Chicago on

My son had it for the first year of his life. It was pretty bad. He was on medication for the first year. However, we were lucky and he grew out of it! They told us they would not perform surgery until he was at least 5. We got it checked after a year and it went away. I hope the same goes for you! I think it is more predominant in girls. Good luck!!! Btw, never heard of deflux before? What is it?

E.

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M.S.

answers from New York on

I know this topic isn't recent, but I am compelled to share our experience here. Years ago when I came searching online for others going through this I couldn't find one. My daughter, now 11, had urinary tract reflux. It's been over a year since she had the surgery, she was at 4th level, and for a long time it went misdiagnosed though clear to me there was something very wrong. The first sign was heavy, constant, bedwetting. When I first brought it up to her Dr. it was overlooked during potty training, but the bedwetting never ended. Then there were the endless UTI's and antibiotics. We did constant potty checks from morning to night, limited liquids in the evenings, always followed a healthy diet of fiber, fruit & veg. This went on for years, yet the bedwetting, and later the day wetting, couldn't be ignored. Tired from not receiving help, at the age of 7 we took her to Philadelphia Children's Hospital. Got up at 4am for the brief 2 hour drive followed by a 3 hour wait, and after one ultrasound, without listening to us, they blamed her bedwetting on constipation though I explained she had not yet moved her bowels that day, and she did daily so that did not account for the problem. We were left with the task of a liquid intake/potty diary, though we had been keeping one for months on our own. After several follow up appointments over the following months and not getting anywhere (being thrown into bed-wetting category) we proceeded for another opinion at Penn State Hershey, where they immediately found the actual problem. One of her kidneys was deformed and abnormally small, the other normal sized, yet neither working at 50%. It was a relief and heartbreaking at the same time to watch the screen as the dye returned to her kidneys. I try not to think of how it could have been eradicated years before if she received the care we sought and she deserved. We were extremely hesitant but decided for the surgery and she's been monitored since.

The day accidents ended but the night bedwetting hasn't let up regardless of many methods. She's also been given medication to decrease the bedwetting and there has been no change. We avoid diapers at home, considering the tremendously wasteful impact they have on the environment, instead opting for plastic bedding in multiple layers placed underneath her regular sheets which are washed every morning. I don't blame her in the slightest but the odor is practically unbearable and vacations of any kind have been more than difficult. We have tried adult diapers for trips, even doubled pairs, but she soaks right through them. We were hoping to camp this summer, however due to my inability to handle the smell it doesn't seem a possibility. If anyone has any tips I'd love to hear them!!!

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S.N.

answers from Chicago on

I have not, but if both children have this problem that is a red flag on their diets. What are they eating? If you are open, you might want to talk to someone at a healthfood store who is familiar with this. keep a diary of what they are eating and watch their bodies reactions closely. What pediatricians prescribe are usually just to treat the symptoms. You want to know the root causes so you can eliminate the problem permanently!!!!!Fresh fruits and veggies. 2/3 Fresh fruits and veggies on those lunch and dinner plates maybe can help. Find a holistic practitioner that may also be able to help. Read those nutrition facts and learn what these products are made with and write main ingredients down in food diary. YOu will find a pattern that may help with UR. I will pray for a healing for your children.

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K.M.

answers from Chicago on

My daughter has this as well. She has bilateral reflux - grade 4 on one side 3 on the other. We see a pediatric urologist, Dr. Cheng, at Children's Memorial. She has been on Bactrim since January of this year - no problems with that whatsoever. We have had no infections since her initial infection. During our last ultrasound we found that all the kidney swelling was gone. We go back in November to see if the reflux is getting better, worse or staying the same. Our doc is INCREDIBLE as is the staff we have had to see at Children's Memorial. I had this as a child and mine cleared on it's own and we are hoping hers does as well. If you are on Facebook there is a group on there for parents with children with this - helpful info on there from Moms who are going through the same things as we are!

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A.P.

answers from Chicago on

I feel your pain! Although I only have one kid with it. What a pain to have both kids have it. So sorry!
My daughter was diagnosed when she was 4 and got a UTI. She is almost 7 now and has been on the Bactrim since the first UTI. She did get 2 or 3 more UTI's even on the medicine. But she has not had one for quite a while now. She has gone in for the cystovoiding test 3 times and has to go for another one in the fall and she has had 2 ultrasounds on her kidneys. So far the kidneys seem to be okay. But the reflux is just not going away. She has obviosly grown taller, which the urologist was hoping she would outgrow the reflux as she grew. At this point, I am ready for her to have the surgery to fix this. If she has not outgrown it by the fall test, I am going to push for the procedure. I hate that she has to take medicine every night and I hate that she has to keep doing these tests. Although she is getting really good at not freaking out too much when they insert the catheter (she is wide awake when this test is done...poor baby) Other than that, she is fine. I am just sick of all the Dr appointments and tests and medicines.

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M.A.

answers from Chicago on

Yep, my 3 year old daughter has a grade 2+ and I have a 4 month old daughter who needs to be tested. Like you, I thought my daughter would outgrow it, but she has not! Our case is pretty mild and she has not had any infections since she has been on the meds. My urologist and I decided to stop the medicine once she is fully potty trained(almost there!) and monitor signs for infection. I too wish it would go away, but for our case, surgery does not seem necessary..yet. Do you need a urologist? Dr. Elizabeth Yerkes at Childrens is really wonderful. I'm sorry I do not have her info handy, but you can probably google her! good luck!

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K.B.

answers from Chicago on

Hi A.,
My 5 1/2 yr old daughter has reflux - grade 3. She was diagnosed about a year ago - after numerous UTI's. She is on her 3rd type of antibiotic, as she too broke through the antibiotics and would got an UTI. She is currently taking Macrodantin, which has been the most successful thus far.

Our Urologist had us do a voiding diary - which tracked when she would go to the bathroom and how much. From that we discovered that she was not going to the bathroom for long periouds of times. Specifically not going after she woke up in the morning (sometimes lunch time would be the first time she would go). Or not going during school and up till dinner time. I was always very diligent about having her go before we would ever go anywhere - but never thought about making sure she went first thing in the morning.

That being said, it seems as if the combination of daily antibiotics and more structured bathroom 'practices', we have been UTI free for 4 months. If my daughter gets another UTI between now and September, we are going to do the deflux procedure. But for now - we're crossing our fingers that things are on the mend.

I realize you are in a different situation w/ your daughter since she is only 19 months old. We have friends who have 2 daughters that had Deflux done when they were infants and both were successful in treating the reflux.

I hope that helps. I know it can be a crazy, confusing time. Don't fret over it too much. It never hurts to get a 2nd opinion. But know that it's not that uncommon of a problem.

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A.A.

answers from Chicago on

My son is 2.5 years old and he has had reflux since he was 5 weeks old. At that point he was hospitalized for a UTI and then we discovered the reflux. He has a grade 5 on the left and grade 4 on the right, but his kidneys have been functioning and growing normally. He's also been on antibiotics since he was 5 weeks old, so no reoccuring infections.
We have seen Dr Craig Smith of Dupage Medical Group since the discovery of this and I just don't like him. He told us to wait and see if it would be outgrown. The last two VCUGs showed no reflux on the right side, but when we discussed with the Dr he said that it could have just "not been refluxing at that time". That sets me off because if the test is not really a good predictor to whether the reflux is there or not, then what it the point of putting my son through the torture of it.
We are expecting out second child in October and I am having her tested as soon as I can because the risk for subsequent children is high. I am in the process of looking for a new urologist for my son at this time.

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S.B.

answers from Chicago on

Hi, I have a son, now 6, with kidney reflux. We are taken care of by two different doctors (urology and nephrology) at Children's Memorial. We did not need surgery- and your doctor can tell you if you would be a candidate for surgery (we are not at this point but are keeping an eye on his kidney function). I suggest you talk with homeopathic people who can overall give great strategies for good health and the medical team to make sure you have the optimal urinary/kidney tract function. For example, we never ever use Tylenol because it is very hard on urinary/kidney function and we limit milk products- because they can (not always) be hard. Also a banana every day to keep away kidney stones! Overall our child eats and lives the healthiest in our family- plenty of rest, no antibiotics, no hormones, no preservatives...all to save the kidney (our son only has one!)

I would be glad to stay in touch with you on this topic.

S. Botana PHD
Host Mom and Local Childcare Coordinator with Cultural Care Au Pair

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