Urine Reflux Has Anyone Else Delt with This?

Hi L.,
I had the same thing! I had surgery when I was 10. It is hereditary, so both of our girls were checked. Our younger one has reflux. Since we knew my history, both were checked as infants. The younger one was checked at 4 mo. & at 16 mo. One side has corrected itself, the other has gotten better, but not corrected. Since hers is not bad, the urologist suggested going back in a year (from her last appt.) The catheder is horrible. My neighbor is a nurse & she said to ask if they could give her something to relax her (some type of sedative). Also, depending on how bad your daughter's is, she may not need surgery. If my daughters does not comepletly correct itself, an option is to inject a type of sylicone (sp?) into the uriter so urine does not travel to the kidney.

Please do not let it go though. My parents didn't know about mine (I had the surgery almost 24 years ago). My symptoms were tingling hands & feet along with some others. It got so bad that the urine ate away my kidneys ~ I had 60% of my right kidney left & less than 30% of my left kidney. Now my right kidney grew to 80% & my left kidney is considered a runt one. Good luck! Heck, I need luck with my little one too!
H.

Hi L.. First of all I am saying a prayer for you right now. My oldest son has reflux, as well as a mirad of other bladder and renal issues. Luckily we diagnosed him during my 20 week ultrasound so he as been treated since birth. My son's kidneys showed up abnormal and this is how we discovered the problem thru a high rish OB. To this day my son's kidneys are about 4 times the size they should be. My prayers are that your daughter is 4 and the tests are truly unpleasant. I remember when my son was old enough to talk they became heartbreaking. Keep taking her to Children's and get a GOOD pediatric urologist. The MAG 3 renal scans I believe are the worst. This is the one where she will be taped down to a table for 45 mintues with a cath and an IV for pics. Then she will have to be upright for 10 minutes and back down on the table for another minute of pics. I'm not trying to scare you, just wanting to explain. My son has had over 18 of these since birth. The other big test is a VCUG. This is also a Nuclear Med test that involves a cath and several x-rays. They fill the child's bladder up with contrast dye and view how the bladder releases the dye and if it washes up into the kidneys. Try and get these tests scheduled back to back and do not let them take the cath out in between!!! A lot less pain and heartache for everyone involved. Just to let you know about my son's issues. He had a UPJ obstruction in is right ureter at birth that was fixed at 6 days old. He also has high grade reflux that was caused by his ureters not being implanted far enough into his bladder. They did a surgery at 2 1/2 where they cut away his ureters from his bladder and reinserted them farther as well as tapering down his ureters because they were way too large in diameter. This resulted in a ureter collape and they went in the next day to place a stint into that ureter. It was removed about 3 months later (mostly because I was pregnant and waited until the second is born before we did the removal). Because of the reflux he was on a daily antibiotic from birth to age 3. Thank God he never developed a UTI and still has not to this day. However, every time he runs a fever without any other symptoms I fear a UTI is looming. My son also has no nerve sensation to his bladder so he does not know when it is full and he should empty. This results in us teaching him by habit to go to the restroom every 2 hours.

Also be aware that this is a heridatary (i'm sure I misspelled that) problem. If/When you have another child, make sure that at the ultrasound tech is examining the kidneys VERY well. My 20 week was clean with my second son, but we still performed a VCUG when he was a month old, just to make sure.

I also pray that you have good insurance and suggest that you start a special savings account for medical expences. Our insurace was good with a high deductible, but 80-20 coverage after that, 6 years later we are still recovering from the debt we incurred from the medical bills. These are very expensive tests, but so needed. Keep track of your receipts and EOBs as well as your mileage to the hospital and drs appointments. You can use this as a medical tax deduction and it will help your refund tremendously!

I hope this has been helpful information for you. If you ever want to chat with someone who has gone thru this, please do not hesitate to contact me. I am in Central IN and my son was treated at Riley Hospital.

Good luck and many prayers.

My 5 y/o daughter has been on an antibiotic (Cephalexin) for several months now as prevention for recurrent UTI's. I work for a family practice and the dr I work for is our family physician, so I can usually get the inside scoop on this stuff. My daughter's dr did not want to put her through the horrible catheterization that you mentioned, as the outcome is usually the same regardless of having the testing done. Preventative antibiotics are used for at least a year. Maybe you could ask your daughter's doctor if the additional testing is absolutely necessary, or if she could just be put on antibiotics for a while. Hang in there, and trust your instincts. Good luck!

A little about me:
I am a 37 y/o mother of a 7 y/o boy and 5 y/o girl. I am happily married for 10 wonderful years and work part-time as a Medical Assistant for a busy family practice.

My friend just went through this with her son and she also said the tests that they have to do with the catheter are horrible. His doctor said they had three options. They could put him on preventative antiboitics that he would take all of the time even when he had no symptoms and hope that he would grow out of it or they could do surgery to correct the problem. There were two types of surgeries available. The first was a traditional type of surgery where they would have to make an incision and correct the problem but they also have a new out-patient endoscopic procedure. The traditional surgery corrects the problem 95% of the time and I guess most kids recover pretty quick from it. With the newer procedure, some kids have to have it done more than once but it is out- patient, quick, and easier on them. My friend opted to have the endoscopic procedure done for him. She was really glad they did it. She said it was no big deal at all. He was sedated when they did it and she said it was easier and less painful than all of the tests they had gone through and hopefully now he is finished with all of that. So far, he hasn't had another infection.

I've heard though in some cases, surgery isn't even necessary, they just keep and eye on things and a lot of kids grow out of it. Hopefully that's the case for you guys. Hang in there!

My daughter had the exact same thing. She was about 10 months old when we found out. They put her on preventative antibiotics for about a year. She was checked a couple of times to see if her ureter changed shape as she grew. Once it changed shape, she was taken off of the antibiotics and was fine. She is now 7 and has never had a problem again with UTIs. Good luck with everything.

I had Kidney reflux when I was a child, so did my Aunt (who is 6 years older than I). The doctors told both of us (our parents) that one of two things would happen. One we would grow out of it and it would be self resolving or two we would need surgery. My aunt and I both needed surgery. It only got worse as we grew. I had surgery when i was 8 years old. (Yes 4 to 5 years of reoccuring UTI's later!!! Some of which I ended up in the hospital for b/c I was so sick :( My poor mother never left my side!) I remember the surgery, the needle sticks and IV's...I remember being sick ALOT and the pain...and then I remember after I recovered from the surgery how much better I felt!! I have only had ONE UTI in 18 years. I was pregnant when I had it. (I better knock on wood since I just said that!)
From a mothers stand point I can tell you that I've had my son in the hospital with other surgeries and procedures. I find (as hard as it is) if you stay positive about the nurses and doctors, encourage her to thank them for helping her feel better and relate getting better to them, not the pain and uncomfortable procedures, she will do better. From a child's stand point, I felt comfort in learning my way around the hospital, knowing where the toy room was and how to get to the "ususal floor". Sad yes, but it gave me comfort. Also, I always had my favorite things with me, my blanket and teddy bear. Whenever we went to the doc's we took them...never knew when a doc. apt. would turn into an over night at the hospital for IV treatment. I had my own blankets and pillows from home that my dad would bring up when I was overnight at the hospital. It was through my health problems at such a young age that I decided I wanted to help others the same way the doctors and nurses helped me :) It can have a positive outcome. Your not alone. I wish you prayers and best of luck!

Hi L.,

We went through this with our youngest child. She had to have the cath. test with the dye (a ridiculously long name for "cath. test with the dye"). They said that if she did have reflux she would most likely need surgery. While I know the thought of that is scary, let's look at what good you will be doing your daughter.

You will prevent her from continued UTI's which are painful. You will guard against the risk of incontinence and a weekened renal system from continuous UTI's. You will prevent toximia which can happen as the more she is on antibiotic, the more resistant her body becomes to them and the less effective they are. When that happens she can have an infection that will spread to her bladder and kidneys and you don't know it until her renal system is destroyed.

As scary and traumatic as this is for both you and your daughter, it is such a blessing that they found this and that it IS treatable. The trauma you go through now will save her in untold ammounts of ways later on.

You will be in my prayers. I hope this is helpful.

L.

Hi L.,
I have a 2 1/2 yo little girl that was diagnosed with vesicureteral reflus when she was 7 months old. she was going in for surgery and had a rt urine test and found out that she had a uti. they did further testing a vcug(which is very unpleasent, gratefully she already had a catheter from her other surgery) and she was dx'd before we left the hospital to come home. she was followed by a pediatric urologist and needed to be on daily antibiotic therapy. she had no problems with daily atb, she was on keflex. she was followed at 6weeks then at a year of diagnosis. at the year she had another test(vcug) where they insert the catheter and inject dye into her bladder. at this point she showed no reflux. the reflux can be graded she had grade 2 which is in the middle it can be 1-4 i believe. i was told as her body grows and kidneys and ureters get bigger, they will generally grow out of it. if not they can do a surgery to place stents to keep the backfow from happening. hopefully this helps good luck if you ahve any other questions feel free to email me personally at ____@____.com.
H. mom of 2, almost 11 and 2 1/2

L., my daughter had Grade 3 bilateral reflux, which was diagnosed right before her 4th birthday, and took nightly antibiotics until we finally ended up having to have surgical re-implantation to correct it when she was 9. You're not kidding about how horrible the VCUG test is, but you'll need to get used to it. My daughter ended up having the test 5 times, and ultimately she decided to have the open surgery because she wouldn't need to have any more VCUGs. (With the deflux you need to have at least one or two more) I don't know where Children's is, but did they offer to use Versed to take the edge off during the test, and did they have life counselors available to help you and your daughter? If not, see if you can go to Cleveland to Rainbow Babies in the future. I switched my daughter up there and we had the most amazing care; she only needed the Versed one time, after that the counselor helped her get thru it with breathing techniques, etc...plus Dr. Jack Elder, their pediatric urologist, actually chaired the panel that wrote the guidelines on how to handle vesicoureteral reflux in children. When we were considering surgical options, the chapter I was given on how to perform the corrective surgery was written by Dr. Elder as well. It's several hours from my home, and I would never go anywhere else for a urologist for my children. If you have any questions or need anymore advice, feel free to contact me. Oh, and if the pharmacy didn't warn you, make sure your daughter brushes her teeth very well after taking her nightly medicine. It damages the enamel..which no one warned me about until we switched to Dr. Elder.

Hi L.,

I have a 7-year-old daughter who was diagnosed with kidney reflux when she was 3-years-old. Since then, she's had to go every year for the dreaded catheter test and an ultra sound. Luckily, last year her test results showed she had finally out grown it, and she was taken off the antibiotic that she had been on for about 3 years. However, she is still on "Miralax" at least for the next few months. Is your daughter on antibiotics (Sulfa) and a laxative. Also, my daughter's urologist had suggested quite strongly to stay away from bubble baths. That could be a major contributor to UTIs.

Further, depending on the severity of the reflux, which your urologist should know, either your child will outgrow it like my daughter did, or surgery will be inevitable. Try googling "kidney reflux". You should find a wealth of information.

Please, don't hesitate to contact me if you would like more details.

My son was diagnosed with urine reflux, after repeat UTIs, when he was 5 mos. old. We did the tests and he was borderline surgery, but if they could keep the infections away with prophylactic antibiotics, they didn't want to do surgery. They said it would take 3-7 years to out grow, 5 being the norm and he would be on antibiotics that whole time. Being a massage therapist and doing a lot of complimentary/alternative medicine in addition to traditional medicine, I tried some alternative therapy (visceral manipulation - very gentle, hands on work, done by a nurse and massage therapist trained in this technique). After the three sessions, once a month, I demanded he be retested. My doctor did it and the reflux was corrected. So my son spent three months on antibiotics, the issue was corrected and he has not had a UTI since (he's 8 yrs. old)! My doctor was amazed and said it was "unheard of" to have it corrected in three months. He decided my alternative treatments were credible and even took information about it!

I dealt with this with my step daughter. They also did the test with the cath and it about killed me as well. We also had to hold her down, she was screaming, it was awful. Well, I will say they gave her keflex or cefilexin (I don't know the spelling) to take every night for one yr before she went to bed, did another cath test then we just had to wait it out. Her problem was her uriters were curved and as she grew taller they would straighten out. She still has issues with certain things, she can't have dark pop or anything with caffene because whe will get sick and start with a kidney infection. She is 15 now and we have been dealing with this for 10 yrs so we are used to it.
Good Luck
J.