My Son Has Reflux of the Bladder? How Common Is It?

Hi H.. I suffer reflux of the bladder and my daughter was tested with a VCUG at 6 months old to see if she had it. She was diagnosed with a grade 2 reflux and her doctor too said that this was common in children and in most cases the reflux goes away as the child ages. She was put on antibiotics to prevent infections and was retested with a VCUG and an IVP (dye test) when she was 18 months old. The reflux had indeed went away and now she is 3 1/2 years old and doesn't have any problems. If you have any questions or need anything, please don't hestitate to contact me.

H.,
I have heard of it. It's very common. They thought my daughter might have the same thing. She has been on preventive antibiotics, and had a VCUG. It ended up she doesn't have it. I was told, if it's serious enough they would operate to correct it. VERY SIMPLE! Let me know what happens. It is a real condition and very common.

hi there my son is now 14 onth old he has a level 5 and level 3 in the exact same condition the docs all say that a level 3,2 or 1 has the potential to heal itself a level 5 like my son has will more than likely need surgery to correct but they will not carry this out until he is 5 yrs old and the kidneys and urethra are of good size. he was diagnosed with this at 22 weeks of pregnancy in the ultra scan he has had all of the scans since being 2 days old at 1 week old he had the dye injected at xray. he has countles blood tests at 2 weeks old he was admitted into hospital for a week on a drip due to getting a break through infection he was born at 9ln 10 and within a week dropped to 6lb 5 as his body was dehydrating him to fight the infection he had. praise god though he has been ok since no more braekthrough infections and the doctors are very shocked as to why he is not much iller for the severity of his grades. he also has a enlarged floppy bladder due to the pur amount of fluid tha gets stuck up ytthere at a time. he does go through a good few nappies and is alot thirstier than most kids his age but this is because of his condition.. to help prevent further infection only let him swim in clean TREATED pools and giv him as much fluid as he can handle it helps to flush out the kidneys to keep them clean and functioning. we are not having more scns in nxt month or so and we are having a nuclear liquid injected into his arm then ultrasound to see how the kidneys actual function level is. so its all go. yup my son has also been on 4 different antibiotics since his birth. hope all this info helps hun. with ur son having a grade 2 n 2-3 there is a great chance he will make a full recovery in a yr or 2 without any surgery xx

Hello,

My son who is now 20 months old was diagnosed with Kidney reflux stage 5 at birth. Which by reading your question seems to sound like the same thing. We have been through a very long long process with everything. I will write about as much as I can remember. So if it is not the same you don’t have to read it all. Sorry it is going to be so long. If you have any question feel free to contact me for anything.

Okay, when I was pregnant the noticed through a routine ultrasound that his kidneys and bladder were always full, they kept an eye on it and we saw many specialists. They decided after it going from a stage 3-4 to a 5 on both sides that they had to induce me at 36 weeks. He had his first surgery at 4 days old and has had about 6 since then. He had his last surgery at 13 months to correct the ureter tubes because they were so stretched out from the urine going back and forth. I guess they called it tapering of the ureters. He has been on antibiotics since birth and since his last surgery has been on Septra. They want to keep him on this for a while to prevent any infections that he may still get while everything is healing and getting back to normal.

If your son is at a low stage, they may try and see if the antibiotic can help and they may be telling you that he can still outgrow it which about 80% of kids can. They will keep checking to see if it is getting any worse and then by the age of 1 they should pretty much give you their opinion on what should happen next. In our case, our son was only getting worse and it was starting to affect his Kidney function. They should do along with VCUG’s a kidney renal scan and ultrasounds on the bladder, uerters and kidney. We were seen about every 3 – 4weeks because it can become worse really fast.

We are military and were stationed in Germany when we found out. We were flown medvac here to Lackland where he was seen and still being seen by the urologist and nephrologists there to keep an eye on him. They are pretty good.

While this may not be the worst thing a kid can have, it can grow out of control and cause many problems if not caught and treated. The good news is that even at the worst stage, my son had no problems ever. With the antibiotics he never got sick, not even an ear infection.(knock on wood. His only sick times were from the surgeries. He was a very normal little boy, who had to go to the drs a lot for blood tests and catheters.

Okay =, now you may be reading and ask why would he need so many surgeries, that is another very long story. So to sum it up. The German dr’s thought that the problem causing the reflux was an unseen blockage. So they did exploratory surgery, and had to go back and fix what they did. We had enough, came to the states, they fixed what the German dr’s did. Let me son heal for a bit, watched him and then scheduled what should have been the only surgery he needed when he was 13 months. SO my advice, if they do decided that after a year or so they need to do surgery, make sure they can see why it is refluxing and get a second opinion.

We had another VCUG, renal scan and ultrasound done and are awaiting the test results. The dr’s seem to think that the reflux has gone down to a stage 2 on one side and gone on the other. So good news for us.

1 more word of advice. I am sure that they have told you. If he gets any type of fever take him to the emergency room and make sure they do a urine test to rule out and infection. I have gone many times and they say oh it is just an ear infection, when it was more. The thing with taking the antibiotics daily, (my son is now on 3ml a night @ 29lbs). They can “stop working”. My son has had to be on 4 different ones since birth. Their body gets use to them, Or with weigh increases, they need a dosage increases.

Thing to look out for as a mom that will let you know something is wrong, he won’t eat and weight loss. My dr’s stressed this to me. Weight loss can be linked to the kidneys not working. Make sure you keep him very hydrated. They gave us a prescription for pedalite.

Well I think this is long enough, I hope that this helps. If you need anything else just let me know. Good luck! Also keep up the breastfeeding. I breastfed my son until after his last surgery. It is so much better for his kidneys to process.

J.

H.,
Let me start by saying from everything our doctor has told us and everything I have read on the internet, this condition is fairly common and most children grow out of it. My daughter has reflux of the bladder too. She developed a urinary tract infection when she was 9 months old and a VCUG showed reflux between level 3 & 4 on one side and level 3 on the other. She is now 3 ½ and has been taking a preventative antibiotic since then. She is on her fourth different antibiotic due to ‘breakthrough’ infections which are resistant to the one she is on so we have to change to another one. We see a pediatric urologist in San Antonio yearly, and the second scan showed some improvement, a level 3 on both sides. The next two years showed no improvement. The urologist said some children grow out of it within a few years or less and some don’t grow out of it until they are in their teens. Some don’t grow out of it at all. Because my daughter has shown no improvement in the last two years and because she has had a couple of breakthrough infections, we have opted to have the surgery to correct her ureters. Hopefully she won’t remember it as time goes by and we would rather get it done now than have to put her through that as a teenager or a pre-teen. She is scheduled for surgery next month. I hope I have not worried you with our story. Your son’s condition is at a lower level and a great percentage of children grow out of it. Keep giving him the preventative antibiotic and have him rechecked when your physician recommends. I will keep you all in my prayers. Please feel free to contact me if you have any questions or want to talk.

My son had something similiar. He is now almost 6 months old. When I was pregnant, the ultrasound showed he had a "prominant collecting part" in the kidney. So, when he was born they did another ultrasound on him and it was still there. They did the VCUG (that was brutal)and it wasn't going back up. They then did a dye test through an IV to check for a blockage. That was negative, too. They told me that this condition was very common in boys and they normally outgrow it. He is suppose to have another test in a year to see if it has gone back to normal. They think he may have had a blockage in me, and it went away, but the duct hadn't returned to normal. Hopefully, everything is normal when he's a year. I'm sure your son will grow out of it, too. Good luck!

my son had the same test and luckily we came up negative, but yeah it's apparently really common, mostly in boys. it corrects itself after a while, but while the urine goes back and forth through the ureters, there's a huge kidney infection risk. i found a lot of info on web md and similar medical sites and on babycenter.com.

I have a son that had the other type of reflux that we all hear and know about. Your son's condition is a new one to me. I did find a few websites that might be useful to you.
http://www.childrensmemorial.org/depts/urology/vesicouret...
http://xpedio02.childrenshc.org/stellent/groups/public/@M...;

The second one is a pdf file I found online. I hope the links work. Seems as though 2 to 3% of the population has this condition, so it's common only in terms of speaking of nearly 7 billion people roaming the earth and that 140-210 million people have the condition. If you know 10 people, maybe two or three of them had it as a child. Apparently, your son can grow out of this. Since a level 2 or 3 is not as bad as the highest level 5, I guess your son won't be having surgery just yet.
Sounds like you have a doctor or doctors that has detected the problem and will monitor the condition. You're already doing your son a huge favor. Hope other moms write to you that can offer advice and encouragement!

my son was diagnosed with hydronephrosis(sp?) as an infant, he was on antibiotics for a while with it, and we had to do a few of the things where the catheterized him and injected his bladder with dye, and then looked at everything through x-ray on a monitor. he was having urine migrate back into the kidneys as well. when he was newborn it was noticed, and honestly i can't remember why they were looking for it to begin with, i assume because this sort of thing is pretty common, he never really had any symptoms when we had the x-ray thingy done but we still had to go back and have him checked when he was about 2 and after that we were given the all clear under the assumption that it had corrected itself. in the case of my son the antibiotics were mostly to prevent any other type of illness from making a urinary tract infection likely. i don't know if this can really help you in any way, but maybe just knowing that there are others who have dealt with this can be of some comfort. at any rate i hope this can offer some help.

Hi H.: My cousin (girl)was diagnosed with this as a toddler and did out grow it. From her experience I was able to help my daughter with her burning of the same extremities. Besides the frequent bladder infections our girls had very bad burning when swimming and I always had to cover the entire area with a diaper ointment or vaseline for protection which helped a lot. My favorite is Dr. Smith's. Apparently this is more common than we hear about. My daughter is 9 years old now and though she doesn't experience as many bladder infections we still cover her when she goes to a pool. I hope this helps. D.

H., There is a prayer in the Bible that you may want to pray over your son and then after you pray it ask God to heal him, also. The prayer is in the book of Numbers Chapter 6 verses 22-26. A mother's prayer works miracles.

Hi H.,

My daughter was diagnosed with Renal Reflux at 10 wks old. The best way to explain it is there is a "ring" between the bladder and the ureter that closes to keep the urine from traveling back up into the kidneys. When a child has renal reflux the ring is not formed. My daughter refluxed in both kidneys until she was 3 yrs old. She took amoxicillin daily until that time. She did not have to undergo surgery. She is 9 yrs old now. She does have permanent damage to both kidneys from the 1st kidney infection at 10 wks old. She has never had another infection and is not inhibited in any way. She's a very healthy and normal kid. The hardest part of the condition is taking your child in for the tests. It was difficult watching the doctors put in the catheters. She didn't care for that at all!! I'm sure things have changed in the last few years, but I wanted to let you that your son will do great!!!!

Dear H.,
My daughter had the same thing, it is common and treatable. She had some other health issues as well. She is 27 now, but at 10 yrs old ,she had collagen implants beside the ureters to help close them off ,so urine would not reflux to the kidneys. She had VCUGs and IVPs, MRIs and various other tests from age 5 thru 20, may I suggest you research and learn as much as possible about current treatment methods. If you'ld like to talk to me please call ###-###-####.
L.
LMT,CD,CHPLN

Sorry H. but I wish I cou;d be of more help.I also have never heard of this type of reflux. I can only tell you to surf the net. Try webmd.com or try to google. I really wish I could be of more help. I hope everything works ou for you. ~~H.~~

H.,
I was born with this condition. They performed surgery to correct the ureter opening and allow for normal outflow of urine. My mother said that the doctors wanted me to be on antibiotics and/or other medications my entire life. I wasn't, though, and I didn't have UTI problems.
I experienced a lot of problems with bed-wetting throughout childhood and adolescence. Quite frustrating and embarrassing, but I learned to recognize the cues in my sleep (often a dream about water in some fashion or even about going to the bathroom - duh, how specific can you get?!) and then wake myself up in time to go the bathroom. That helped and I saw great improvement and fewer incidents.
As an adult I still have occassional problems. It usually happens when I am stressed and very tired and therefore physically and mentally not as able to recognize the cues and respond. I've also learned that certain foods (especially orange juice) affect my body in a way that makes me more prone to that. Learning about pelvic floor exercises (Kegels) has helped me to be physically more able to prevent incidents, especially the "laughing so hard I nearly pee on myself" situations!!
I would imagine and hope that medical technology has improved in the past 30 years and that the corrective procedures are more helpful now than they were to me. Hope this info helps!
Blessings...

Hi H., My name is L., I am 22 years old & have a 3 year old daughter. Last year I had her at the urologist because of what they thought was reflux of the bladder, thankfully it wasnt, just a UTI, but my daughter did go through the same treatments of the dye in the bladder to see if it was in the kidneys, they told me that they get alot of cases like this. She has to be super careful of baths & can only use a pituclar kind of bubble bath(if you want it e mail me). She was on antibiotics to prevent any further UTI. She hasnt had any from that point, and I hope that I was helpfull to you.
~L.
(____@____.com)

H., my daughter had it too. On both sides. I can't remember the exact # grades, but it was considered "severely high grade on one side & moderate grade on the other side. She was diagnosed with it as a baby & we took her to Dallas Children's hospital, where we did exactly what your dr. wants to do. She was on preventive antibiotics & we went back to the hospital twice/year for a VCUG test & urine testing to monitor the progress. Putting her through the VCUG was tough w/the catheter and all,.... but if I had to do it all over again,... I surely WOULD !
Each VCUG showed that she'd progressed a little each time, so they insisted that we stick to the antibiotics until she grew out of the condition.
Her VCUG at age 4 revealed that the condition had completely corrected itself, and they told us we were finished! That we could discontinue the antibiotics, and go on with life as normal!
So, she was on the antibiotics from age 1 until age 4. (They were willing to keep her on the antibiotics until she was 5 yrs old before considering surgery).
But,... just as they predicted.... no surgery!
She inherited this condition from me, & I had surgery the surgery when I was 3 yrs old. The surgery worked on me, and I haven't had any trouble since then, but I've hated that ugly scar all of my life! (I'm 35 yrs old now).
Giving your child antibiotics every day for years isn't fun, but it's worth it to avoid the surgery! My daughter is 6 years old now, and still hasn't had one single bladder or kidney infection since that treatment! Hang in there! It really works! The urologists in the renal clinic of Dallas Children's hospital are wonderful!

Yes I have heard of this a co-worker's daughter has it and the antibotics really helped her. Before being diagnosed she got a lot of blatter infections. One advice i have is to make sure you brush his teeth or rinse with H2o real well antibotics are very sticky and sugary you dont want him to get cavitys due to the meds. Good luck

What are the symptoms of this? How did he become diagnosed? What was going on with him?

I have heard of this. My son has the same problem, however he doesn't have reflux only UPJ and hydronuphrosis. Basically same case in the ureter, it has a narrowing so his kidney cannot release all of the urnine at one time and that causes his kidney to swell. He was on antibiotics for the first two months of birth but since there was no sign of reflux he was taken off of the antibiotic. I was also told that this is a common condtion among boys especially. The antibiotic is there to gaurd against any urinary tract infections. My son is 10 months and has to have a renal scan every 3 months to see how everything is progressing. In most cases these issues resolve on their own if not then surgery is need. So that's where we are at this moment. Don't feel like your the only one, i totally understand what you are going through. I too am still breast feeding.

My husband has this same problem. It is fantastic that you are taking steps now to help your son. My husband's parents ignored his condition, and it caused him some problems in his adult life.

However, even untreated until adulthood, my husband has had a successful recovery. He developed a urethral (sp?) stricture shortly after we were married, and it caused very painful urination and a slew of urinary tract infections. After our daughter was born, he developed epiditimytis (sp?), and had corrective surgery to open the stricture. It unfortunately rendered him sterile, so we were only blessed with one child. He occasionally (the last one was 5 years ago) develops kidney infections, but he drinks a LOT of water and cranberry juice, and an infection of any kind is very rare. He just recently had a routine check-up, and he is in perfect condition. He will be 38 in November.
Some tips for you and your son: let him drink water, and when the doctor says it's okay, give him plenty of cranberry juice. Also (you're going to hate this), encourage him to urinate sitting down. My husband hasn't had any pain or complications with his ureter or kidneys for nearly 5 years because he has developed the habit of sitting down instead of standing up to urinate. I don't know why this works, but it does. The doctors can explain this to you, because they explained it to my husband. I'm just happy that I don't ever have to complain about him "leaving the lid up"!
Don't be too concerned. My husband is the classic case of what happens when this condition is left untreated. And if my husband is 'worst case scenario', then your son will lead a totally normal life without complications: maybe just a few trips to the doctor once a year when he's older, and a wife who will laugh at him on their honeymoon when she sees him "peeing like a girl". Good luck to you, and I hope this allayed some of your worries and fears.

A.

My daughter had the same thing only she only had it on one side and it was a level 1. She is 7 though, and we just recently found out a few months ago, also through the VCUG test. We are seeing a pediatric urologist at Texas Children's, Dr. Jones. He has been wonderful. She had the procedure called Deflux done in August. It is labeled "surgery" but there are no incisions. It is an out-patient surgery. They had to put her under general anesthesia, but only briefly. The procedure only took about 30 minutes. We go back next week to have another VCUG done to see if the Deflux was successful. It is supposed to have a 90% success rate for lower grades of kidney reflux. I highly recommend Dr. Jones!

I actually had this as a child. I had surgery and that was over 30 years ago! I am sure with today's technology the treatments are even better and less evasive. It is something I have to have checked occassionally but all is well. Good luck!