My 4 year old was diagnosed with grade 2 kidney reflux in her right kidney with no reflux in her left now she has grade 4 in her right kidney and from nothing to grade 3 in here left and I was told that nothing could be done to help her until she reached grade 5 in either of kidney now the are enlarged and the right one has alot of cysts inside the kidney please any advice would be great thank you

Wow, grade 4-5 are the highest for vesicoureteral reflux. I have grade 2 on my left kidney, and the only thing that I can do is keep taking antibiotics to prevent infections from occurring. Has your daughter's doctor given her antibiotics? Are the cysts affecting the kidney's function? People can live perfectly well lives on one kidney, in case one needs to be taken out. I think you should talk to your child's doctor about your concerns and get other opinions from other doctors as well. Good luck!

My daughter had grade 3 reflux in one side. They gave me two options, antibiotics or surgery. I chose surgery and am glad I did because in the hospital my daughter roomed with a 7 year old that had relfux for 3 years and was told she didnt need surgery. She finaly got a second opinion and had the surgery. Sadly she already has a signifigant amount of damage to her kidneys.

That is what I am going through now with my daughter I asked my family doctor to send me to a specialist and he sent me to a pediatrician and the peditrician told me she would be on medication for awhile and she has been on so much I do not want to put her through any more it has been to long she was diagnosed with grade 2 reflux in her right kidney shortly after her first b-day with nothing in her left and now both are affected the right being the worst and now probably so damaged there is no way to fix it I just worry so much because I see her in so much pain all the time could you please reply back and let me know what happened after your daughters surgury and how big the incision was thank you

Hi...my 4.5 yo daughter has a Grade 3 on one side and a Grade 4 on the other, just diagnosed in January. She has been on nitrofurantoin since January. We are waiting another year and will be a repeat VCUG to see if it has resolved...if not, she will need surgery. At this point the daily antibiotics are preventing any breakthrough infections.

My daughter was diagnosed prenatally with hydronephrosis in her left kidney. Shortly after her premature birth, she underwent many tests. Her final diagnoses were a duplicated left kidney, left UPJ obstruction, left ectopic megaureter, left ureterocele, and VUR Grade 4/5 to the left upper pole and Grade 2 to the lower left kidney as well as the right normal kidney. She has undergone 3 surgeries. She had to have her left upper pole and ureter removed because the reflux caused the hydronephrosis, which damaged the kidney. She had no function in the upper pole. Her second surgery was to repair her bladder, remove the remaining ectopic ureter, and reimplant her ureters. She was still only at a Grade 2 in the right and remaining left. Reflux is nothing to mess around with. My SIL had reflux that went undiagnosed for 30+ years. By the time is was discovered, she was in kidney failure. She has since had a transplant and is doing well. I have heard that for the lower grades of reflux, there is a good chance the child will outgrow it by the time they are 5. Seeing as to how your daughter is 4 and she has gotten worse, I would push to have her evaluated by a pediatric urologist. I could go on and on, but will stop here. I will keep you guys in my prayers. I know how tough and scary this all can be.

Take care,
Julie SAHM to Jeffrey 9, Keith 7, Kaitlyn 5, and Stephanie 2

Hi....my daughter has been referred to a pediatric urologist. The regular urologist wanted to keep her on the antibiotics until she was 14! We weren't too happy with that situation. I had done research and knew that a Grade 3/4 reflux would probably need surgery. Kingston, Ontario does not have a pediatric urologist (which is amazing because we have Queen's University here and both of our hospitals are teaching hospitals). We had to wait 4 months for a referral from a ped urologist who visits once/month from Children's Hospital in Ottawa. He suggested we wait and watch as she is not having any breakthrough infections on the antibiotics. If she gets a UTI in the meanwhile, surgery will be required. She already has scarred kidneys but they are still growing properly (at this point). One of the girls in Talia's daycare has a Grade 2/3 reflux and she is having surgery in Ottawa in December. I've only just started talking to her mom and she was quite surprised that we were told to wait and see. Mind you her daughter is not tolerating the antibiotics and is continuing to have UTI's.

Pamela

Julie...I checked out the pics of Stephanie. She truly is beautiful! Talia in on the same med as Stephanie. In Canada it is marketed as Nitrofurantoin. Yucky yellow stuff that Talia chokes down every day!

bye for now

Pamela

Thanks Pamela. Stephanie hates her medicine! I have to hold her down and give it to her drop by drop or she will gag and throw it up, or spit it out. She gets 2 ml 1x/day. Good luck and please, keep us posted!

Julie

Hi Julie...Talia takes 5 ml 1xday. She takes it in one shot but chases it down with juice or water. We have a whole little routine including dances and humming that we do prior to her taking it!

bye for now

Pamela

hello
i had kidney reflux when i was younger (i'm 17 now)
i think i had grade 4? or 5? i can't remember.. i was operated on when i was 2, and i am perfectly fine now. however, the incision was about 8cm long... and the scarring does not go away (mine is still there)
by the way, i hope you are all getting your other children tested... the condition is usually genetically linked. my sister also had it, except i she only had grade 2 or 3, and it cleared up on its own (she was on antibiotics for a little while)
i hope your children all turn out ok!!

Regan_89...I am taking my 8 yo daughter to the doctor on Tuesday to get a referral for a kidney ultrasound. She had 2 UTI's when she was 4 and had an ultrasound at that time and everything looked OK. We are going to repeat it to make sure there are no problems. They do not recommend a VCUG at her age unless there is cause for concern.

Pamela

My 3-year-old daughter is scheduled for a VCUG next month. Her last one was at 18 months, so I don't think she remembers it. I remember it as an awful experience! Does anyone have any advice for preparing her for the test? Any way it can be a less traumatic thing?

I'm sorry it took so long to get back to you but there is actually no way to prepare your little girl for this I still do not know how to prepare my 4 yr old for VCUG on Nov 21 and for her round of other tests that have to be done that day all I can really say is that it is hard I still worry and I've been dealing with it for 3 and a half yrs it doesn't get any easier god bless



My 3-year-old daughter is scheduled for a VCUG next month. Her last one was at 18 months, so I don't think she remembers it. I remember it as an awful experience! Does anyone have any advice for preparing her for the test? Any way it can be a less traumatic thing?

I have a 7 year old daughter who has been having frequent utis for about 2 years, she was scanned(uktrasound) and apart from the fact that she had an extra half a kidney on one side(known as duplex) everything else seemed normal.

We followed all of the advice like no bubble bath drinking water blah blah...anyway the utis have come back with avengence so we go back and she has another scan and is also put on daily antibiotics to avoid future utis..this time the scan showed her right kidney had shrunk and her duplex kidney had grown larger, they discovered reflux and now she has to have two test, one a nuclear xray to check the % function of each kidney and the other a catheter inserted to see what grade her reflux is...I am worried about this procedure and wondered if anyone else had experienced it and if so was your child sedated in any way?

It makes you feel so so sad and it is so worrying because all the symptoms dont always show now and she will get a roaring fever, I guess now we may get some answers.

My 4 year old was diagnosed with grade 2 kidney reflux in her right kidney with no reflux in her left now she has grade 4 in her right kidney and from nothing to grade 3 in here left and I was told that nothing could be done to help her until she reached grade 5 in either of kidney now the are enlarged and the right one has alot of cysts inside the kidney please any advice would be great thank you

Hi Jenn. My name is Jennie, I am 30 yrs. old with an 8 year old daughter that has fought the great fight of kidney reflux since she was diagnosed at 18 mos. and is looking at surgery this summer. She is at a grade 5 on her right kidney and between a grade 3 & 4 on her left. .....my daughters story could just be what you need to hear.

I am 34 years old and have kidney reflux. I was in and out of hospitals as a baby and child more than to the playground. Infections and stones were and still are bad. The downfall to my reflux is that it was not diagnosed when I was a child. I was told by several Physicians that had this been caught in earlier years, it could have been corrected by surgery with no problem. I do not understand why a Doctor is telling you he/she can't do surgery. I'm not pretending to know everything about this disorder but I think there is an answer for your child. Good Luck

My 4 year old son was diagnosed with grade 5 reflux on both sides when he was a week old. The reason he was diagnosed so early is because he was born with radial club hand and at the same time that developes in the womb, the heart and urinary tract does too. So theysaw his arms and done further testing. He was put on anitbotics until he was 8 months old and he had surgery. The incision was about 3 inches long and healed up nicely. It is about where a woman would have a c-section. And it just looks like a crease or a line like from where he was sitting. His left kidney is also small and underdeveloped. But he is fine for now. I know how hard it is to watch your child go through testing and surgeries. Like I said, he is only 4 years old and has already had a total of 12 surgeries. But he is a trooper!! He can destroy a room with those little hands faster than my normal 6 year old!! Sorry I kind of got off the subject, but sometimes I need to get things off my mind. Good Luck!! :wave:

I have a 3 year old daughter that was diagnosed today with grade 3/4 reflux in her left kidney, along with a "extra" ureter on the left kidney that is not attached to the bladder?? It started about 5 weeks ago when she started complaining of flank pain. I took her in to the doctor and she was diagnosed with a UTI. We went back after 10 days of antibiotics and they dipped the urine and said it was fine, even though she was still having symptoms (frequency, urgency, foul smelling urine). Within 1 week, she was having severe flank pain with blooding urine. I took her back in and was given another antibiotic for 10 more days. When went back in for a recheck again and the dipstick was negetive, but I knew her urine looked cloudy still and still having symptoms, so I insisted that they cultured it. WELL surprise, surprise she STILL had the UTI. She was started on another antibiotic and set up for a ultrasound and VCUG. These tests were done today and that is how she got the diagnosis. The doctor is suppose to give me a call in the morning and let me know what they are going to do. I have researched alittle and assume that she will be on a daily antibiotic. Is there anything else I should expect. I also read that it runs in siblings? Should I ask about my 5 year old son or assume without symtoms that he is fine? BTW I am going to ask for sedation if we have to ever do another VCUG. She was traumatized and it took the nurse 4 attempts to get the catheter in and she was digging around trying to get it in. IT WAS HORRIBLE FOR BOTH OF US :(

Hi mom2alexnabbie,
My daughter was diagnosed with reflux when she started having one uti after another at 16 months. At the time it was grade 2-2 1/2, but her last VCUG showed it at grade 3. She is now 3 years old. Honey, the VCUG is awful, and there's not much you can do about that, except try to be brave and strong for her--try not to let your fear and concern show in your face. The techs told me they can't sedate her because that will relax both kidneys to the point that reflux will appear in both, whether it's there or not. Mary Helen has been taking antibiotics for nearly 2 years now, and she is scheduled for surgery on Monday. This is a new procedure called Deflux. She will be put to sleep, then the doctor will go up through her bladder with a scope to the site of the reflux and inject a material called Deflux that will "beef up" the ureter where it's loose and wide. She will continue her antibiotics for 3 months, then have her (hopefully) final VCUG to make sure the reflux is gone. We don't really want to have her put under anesthesia, but we don't want her to continue to go through the VCUG's for years either. Last VCUG I met a 10-year-old girl who keeps going through it. Breaks my heart to think of years and years of this, and Mary Helen gets more and more afraid of anyone wearing scrubs or a white coat every time. We will be so happy to be through with this.
As for your son, I wouldn't put him through the VCUG unless I had to--if he's not having uti's, then maybe he doesn't have reflux. It does tend to be common in siblings--our Dr. told us 25-35%--but if he's not having uti's I believe I'd assume he's okay. I have a 6-month-old daughter and we have decided against a VCUG unless she has a UTI.
Good luck. I'll keep y'all in my prayers.
jujub

Hi all,
I have been reading your posts and I am so nervous. My 3mth old daughter has just been diagnosed with bilateral grade 3 kidney reflux. I had never heard of this before, and am amazed to see how common it is. I would greatly appreciate any advice anyone can give me. She wont see the peadiatric urologist till the 31st of march, till then i'm at a loss to understand whats going on. I have heard about long term antibiotics to prevent recurring uti's, and maybe surgery. Both sound very scary. What are the side effects of taking antibiotics for such a long time? If she does have to take antibiotics long term, what is the best diet to start her on at 6mths? Does she need special foods to boost her immune system? Is there anything more I can do to improve her condition? I would really love to hear from anyone who has dealt with this, and what was the outcome, I just cannot stop worrying.

Hi all,
I have been reading your posts and I am so nervous. My 3mth old daughter has just been diagnosed with bilateral grade 3 kidney reflux. I had never heard of this before, and am amazed to see how common it is. I would greatly appreciate any advice anyone can give me. She wont see the peadiatric urologist till the 31st of march, till then i'm at a loss to understand whats going on. I have heard about long term antibiotics to prevent recurring uti's, and maybe surgery. Both sound very scary. What are the side effects of taking antibiotics for such a long time? If she does have to take antibiotics long term, what is the best diet to start her on at 6mths? Does she need special foods to boost her immune system? Is there anything more I can do to improve her condition? I would really love to hear from anyone who has dealt with this, and what was the outcome, I just cannot stop worrying.
Hi aussiemum,
I know it's worrisome, but the worst part of it really is the testing--catheters, VCUG, etc. If your daughter is put on antibiotics, it will be a much lower dose than what she'd be getting to get rid of an infection. Both the pediatrician and the pediatric urologist assured us that there would not be any ill effects from it. I do not know of any special diet--Mary Helen is just a normal 3-year-old who thinks she can survive on junk food or nothing at all (don't worry, I don't let her exist on junk food!). Since your daughter is only 3 months old, I would think she would continue to get adequate nutrition from breastmilk or formula.
Mary Helen had her surgery yesterday morning. She did great until she woke up from the anesthesia, and howled so loudly I was sure she'd wake up the other surgical patients! The first coherent thing I heard her say was, "But I'm not SICK!" The deflux was not a very invasive procedure--Dr. Hill used a scope to go up the urethra, through the bladder, up the ureter to the site of the problem. The only side effect she's had is a little burning when she potties, and a very warm bath helped a lot with that. By afternoon she was running and jumping like nothing had happened.
I'm not trying to minimize the seriousness of reflux, but do try not to worry so much; it doesn't help (as I've learned firsthand), and it will only make you sick. Try not to jump to any conclusions until you've spoken with the urologist. I know it's awful to watch your child go through all the testing. At least a 3-month-old is not old enough to know how to struggle and fight the nurses--when she's older it will be harder.
Hang in there, and let us know what you find out!
jujub

Mary Helen had her follow-up VCUG yesterday. Unfortunately, reflux is still present, but it's only grade 1 now. She is scheduled for another deflux injection June 24. Her doctor has moved to Knoxville, TN, and the children's hospital there is WONDERFUL! The whole experience, VCUG and all, was so much better! Our doctor told us that it is possible to sedate her for the VCUG and that the techs at Vanderbilt just don't want to do it. He also recommends testing our 8-month-old, but I haven't decided to yet. Hope everybody's doing well!
jujub

hi i am 31 years old and just diagnosed with reflux and 1 kidney larger than the other im just now going through some tests i dont have any advice at this time but if anyone has any for me i would be greatful dont know what this means for me but i hope all goes well with your children they are a blessing. good luck to you all.

My daughter cried and cried as a baby and found kidneys to be the problem. She was catherized so many times I can't remember the #. Now she is 9 and has been on medicine for 4 years for kidney reflux. They want to do surgery. She has had the nuclear test yearly and the cathedar test yearly. She hates it! Each year it gets worse for her. 2 years ago she fought so much they said they would not do it again if she couldnt be calmed down. I tried to bribe her, sing to her, beg her, nothing worked. The 1st year was the best because she didnt know what to expect. Last year I called and got medicine to calm her. This year I am getting stronger medicine to calm her. She is normally very well behaved and shy - but when it's time for this test, she cries every day.
The cathedar test = 1st they clean the area, insert cath, fill with liquid, then exrays, then as it drains, they take more pictures.

Wow, I just got the email about the new post by melissa_lost and realized how long it's been since I posted or even had to think about this board. The reason for that is--following the second deflux procedure, Mary Helen is REFLUX-FREE!!!!! :bouncing: There have been no kidney infections and she has been off the antibiotics since September. No more vcugs; only an ultrasound every 2 years or so.

For all of you still struggling with this, I promise to keep you in my prayers. God bless!

jujub

Sorry it's been a while since the last update. I took my now 5 yr Bryce for her VCUG on June 3 and after 2 years of clean tests and ultrasounds we have good news she is REFLUX FREE we are so very happy after 5 years of UTI's and constant doctors visit the preparation for the possible surgery we find that she has corrected it herself but must be tested every couple of years for the risk of it possibly coming back and that they think we should have our 2 year old tested as a precaution as there is a 50% chance of her having it to. I just wanted to share the good news and say Thank you to all of you for the help and I will continue to post with any advice I can to help another parent going through this as you have helped me to cope.

Thank You All

I'm new @ this message board thing, but it's WONDERFUL. I have a 3 yr old daughter, Hadley, who was VUR. She was diagnosed @ 13 mos old. She has grade 2 on both the right & left side. She takes a nightly antibiotic & does fairly well. At times though, she'll spike a "high" fever & I'll take her to her dr & she has NO ear inf, NO throat inf, so my feeling is, it's the VUR. She also has Asthma. We keep that under control as well. For those of you out there that your child has grade 2, both sides, are they having surgery, or do you wait? I know her pediatrician will guide me, but we recently relocated from NC to KY & her ped here is NOT familiar with her case. He's a WONDERFUL pediatrician. I would like another "mother's" advice. Her yearly VCUG to be scheduled is coming up in the next 2 months. I appreciate any advice anyone can give. My heart goes out to all the children with VUR. You're in my prayers.

In general, from my experiance, most doctors tell you to wait and hope that the child will outgrow the reflux as they get older. The antiobotics are given solely to prevent infections that tend to reoccur with this. When I was diagnosed with it little was known about VUR for children and especially adults (and this was only 20 years ago; they didn't even have a way of testing for kidney scarring then apparently) so things may have changed now but for grades 4 and 5, they usually recommend surgery. The poor child has to undergo several VCUGs throughout the years (they are even less fun as an adult) and its just no fun. My mom, to get me through the VCUGs, because she knew how awful they were for me to undergo would allow me afterwards to pick out a small inexpensive toy from Toys R Us aferwards if I was a big girl and got through it without a fuss. The thought of a reward afterwards made it a lot easier to get through, so maybe treat them to something like that or ice cream, whatnot. There's a good chance your child will outgrow it. Doctors know about VUR a lot more now for children (still not so much for adults) so if things don't seem right with one Urologist, go see another. It can come back, mine did as an adult, they had no choice but to operate (apparently I was beginning to turn green :p) but even so, the Urologist admited he had no clue about the long term affects. But, regardless, if she outgrows it or needs surgery, its like night and day for most children. After they're better, its like being a normal kid again; the energy comes back like it never left. Good luck to you, I hope it works out.