Any Other Mom's Have a Daughter Go Through the VCUG Test for Bladder Infections?

My 16 year old daughter has Branchio Oto Renal Syndrome, which involves kidney problems. She's had several VCUG tests starting at about 18 months of age, until about age 9 (knock wood, things have been behaving over the past couple of years). When she was 9, she didn't even cry, and everything was fine, and she certainly doesn't remember any of the ones when she was younger (I think I was more traumatized by them than she was)

My daughter had a UTI when she was 2 and they did a septic workup on her as well. She was catheterized and screamed in the ER it was awful. We then had to do an ultrasound of her kidneys which all turned out ok but she would not lie down in the doctors office for 1 year or so following that.
I understand what you guys are going through. Just be gentle and make her diaper changes as fun as possible so lying down is not a source of stress. My daughter is fine now.
Best re: your results.
JT

My son had this test done when he was 1 day old. The nurses took him away to the radiology dept. so I didn't have to hear him cry. It showed he had no reflux, but he did have to have a renal scan when he was 3 months old and was strapped down to the machine for 30 minutes. It is so hard to hear them scream and cry and not be able to do anything about it!! His nephrologist told me that he won't have to have the VCUG again since it came back negative for reflux, but they did find out that he only has one functioning kidney(one is full of cysts and so it doesn't work). I think they only have to do it once to diagnose the reflux, and then they determine the treatment from there. I hope everything goes well and I'm sure she will be back to normal as soon as the soreness goes away. Take care!!

I'm so sorry you have to go through that! Each time I had a catheter, the nurses tore a little bit of the area and it burned anytime I had to go to the bathroom. This lasted about 3 weeks. Witchhazel pads seemed to help a little - at least cooled the area down. I'm not sure if you can use this on infants, but you may want to check it out. However, the diaper changes may be difficult just because she's scared to let anyone touch her there rather than from pain. This will gradually go away. Children recover much more quickly than adults, and yes they will forget at this age. My son had hernia surgery, and he doesn't remember it. Best wishes and good luck with baby #2!

I am an xray tech and can tell you not only as a professional and a patient of the VCUGs, yes, they are that uncomfortable but YES she will forget. The test will NOT need to be repeated, or should not. The results they receive are either positive or negative. The urine either comes back UP the ureters or it doesnt.

If you have any questions, please email me.
R.

My daughter had reflux as well and went through the same horrible tests. She was 2 yrs old. She had the surgery to correct the reflux and has been fine ever since. She is 4 1/2 now and says she can't remember the tests or sx. She only remembers going to the hospital. It was horrible at the time, but I am so glad she had the surgery.

Hi C.!

What a horrible thing to have you and the kids go through! The one person that you should have been able to trust let all of you down. I am glad that you were wise enough to get out of that terrible relationship. I dont have a rec for a therapist but I would think that your pedi doc should be able to give you one. Good luck and good job!

I'm so sorry you have to go through this my daughter had her first one at 12months old it was the same thing that your daughter went through she screamed so bad and cried so hard i cried myself because i couldn't do anything but hold her down and try and tell her it will be ok and over very soon. she did have reflux. she is now turning 6 next month and had to have surgery to try and correct the reflux back in march of this year. she had 4 vcugs they are every 18months. she had 4 because the first one was at a dif hospital and they didn't do the test long enough and missed that she had reflux she has had 9 uti's and one really bad kidney infection. her first uti was when she was 6 months old. they had her on antibiotics since she was 6months old and 2 months after her surgery she was taken off them. when my 2nd daughter was born they did the vcug when she was 1 month old thank goodness she did not have reflux. with my daughter after her first catherter and vcug she never did let me clean her down there when i changed her diaper she would scream every time i changed her and try and pull away from me. again i'm not trying to scare you or anything just telling you alittle about what i had to go through with my daughter and her reflux i'm soooo sorry that you have to go through this it is a very hard thing to go through. if you have any questions about anything i might be able to help please feel free to email me at ____@____.com i will prey for you that your precious baby girl does not have reflux and will not have to have any more vcug's done.

C.,

I went throuth the test with my daughter when she was 10 months old. I agree - it is awful! We discovered that she had this "reflux" when she had fevers of 103 - 105 degrees and was unable to break them. She ended up in the hospital for 5 days on antibiotics and daily urine tests. She was on a daily dose of amoxicillin to keep the urine free of bacteria just incase it would reflux back into her kidneys. Any time she had a fever of 100.5 or higher, we had to take her to see her pediatritian for a urine test. Her doctor referred us to a urologist and it was suggested that we have a "de-flux" procedure done. The urologist explained to us that over an extened period of time the urine that ends up back in her kidneys could cause kidney damage and in her lated years could possible end up n dialysis. I hated the thought of her having to go through a surgical procedure even if it was a minor one (he was done by the time I went and sat in the waiting room). We finally decided to have it done and I have not regreted my decision. She probably would have had to have the VCUG done twice a year.

K. - mother of a 9 year old son and a feisty 5 year old girl.

My son had the test when he was around 2 1/2, and the only thing he has to say about it now is that he got to watch lots of Barney at the hospital. At my request, he was sedated but not knocked out. His result was negative, so that was the end of it for him. On the other hand my daughter had the test when she was ten, and she was terrified because she had heard the test described when her brother had it. She actually found the test less upsetting than she had anticipated. She had a positive result and we opted for a day-surgery procedure which wasn't really surgery. Under anesthesia the urologist was able to built up the sphincter that had the reflux. A few months later she had the VCUG again, and the reflux was gone. The urologist says she does not need the test again, the success of the procedure is considered irreversible. Hope this helps, and I certainly hope you will receive a negative result on the reflux, but if she needs the procedure, I hope they offer you the non-surgical option. we were thrilled that it went so well.

Please take the time and opportunity to visit NAET.com, and read the book "Say Good-bye to Illness" One of the wonderful things about this procedure is that infants can be tested and treated through a surrogate (like you mom - so long as you and your baby maintain skin to skin contact). I go to Dr. David Karaba in Fullerton ###-###-####. Dr. Devi - the originator of this procedure is in Buena Park.

Reading the book is really the only/best way to become fully informed and I cannot encourage you srongly enough to take the time to do the reading.

Dear C.,

Yes, she will forget. My daughter drank some perfume and I had to hold her down while her stomach was pumped. Yes, crying and yelling all of the time. Then about 2 hours later, when we were back home, she was just playing around like nothing happened. C. N.