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Old 10-22-2012, 08:49 AM   #1
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Does anyone have experience with VUR?

My daughter has vesico-ureteral reflux. She had really bad bladder infections, starting at 6 weeks old, and was on antibiotics for 2 1/2 years. She had surgery (ureter reimplantation) when she was two, and has been doing very well ever since (she'll be 8 in December). Her last voiding cystourethrogram showed she still has reflux, but she's not getting infections anymore and doesn't need to take the prophylactic antibiotics.

Anyone else have experience with this? How often do you repeat the voiding cystourethrograms?

TIA!
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Old 10-24-2012, 07:37 AM   #2
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Hi Dawn,
Both myself and my daughter have gone through this.
My case was much more severe than hers.
I had surgery at 9 years old.
I did have a follow up test at 22 years old, I was newly married and having lots of bladder infections. It showed nothing significant.
I have been very healthy ever since.
My daughter was diagnosed at 9 months old when she came down with a kidney infection.
If I remember correctly she had a level 2 which is considered mild.
She was on antibiotics for a year and by the end of that year she had out grown it completely.
After the last voiding cystourethrogram test ( she only had two) our doctor said that she did not need any more testing, but to
bring her in for a urine test every time she had a fever.....after a year or so we stopped
testing for every fever.
She is now 12 years old and in great health.

I am not sure if I have been much help.
I know that those test are not pleasant and I would want to stop too if it were OK to do so.
I am so glad that your daughter is doing better!
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Old 10-24-2012, 09:19 AM   #3
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Heather,

That's actually a great help. I'm glad you and your daughter are doing well. I understand this can run in families, and DH's mom has it as well. Keira was a 5 on one side and a 4 on the other before her surgery, and she's still at a 3 and 2, but with no issues currently, I think I'm going to just go with the flow unless she presents with symptoms. Every time she has a fever, that's my first thought, but "knock-on-wood" we've been infection free for years.

I really don't want to put her through another test if she's doing well.

Thanks!!
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Old 10-24-2012, 10:23 AM   #4
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So glad I could be of help.

2 and 3 are petty good results!!
I'll bet she does not remember the surgery.
My daughter has no memory of the test that seemed so traumatic at the time.

I remember when she was first diagnosed, I felt so alone and scared for her.
Turns out it is not as rare as I thought and have run into several people who have had this.
I do believe it does tend to run in families.

When my daughter was little I am sure my neighbors and friends thought I was such a nut. I became a total germ freak in order to keep my daughter from catching colds and the flu. Every fever required a trip to the Dr. and because she was so independent she would not pee into the cup, we had to catheterize her every time. She cried.... I cried.....it was awful. So so glad that is all over now!
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