My daughter (15 months old) was just diagnosed with a duplicate urinary system. She had a VCUG done on Monday and during the test, I noticed the reflux in 2 ureters on her left side. Nothing on the right side. I called her pediatrician yesterday because I couldn't wait for them to call me and the only thing the nurse really said was we're referring her to a uriologist. I once again called the urologist yesterday to schedule rather than waiting for them to call me. We go in 2 weeks. Here's my concern....I know she has a duplex kidney and duplex ureters with grade 3 reflux (the pedi nurse told me). She didn't mention anything for the right side but I was the one asking questions. I should have asked. I've been researching study after study and have found that in her case with a grade 3 reflux in both duplicate ureters, the probability of antibiotic treatment is very low (about 7%). I'm afraid she will have to have surgery to correct it, which I'm okay with, but I'm very scared. She has been getting UTI after UTI for the past 2 months. She just finished antibiotics two days ago for a E.Coli infection and now she's running low grade fevers. I'm afraid she may have another UTI.
Is there anyone who has experience with a duplicate system with grade 3 reflux? What should I expect? Noone I know who has girls has had this issue so I have no support system to ask questions. In the past couple of days, my mind has been consumed with this. I need mental relief! I'm exhausted. I can't wait 2 weeks to have an "idea" of what will happen. What are the chances she'll need surgery to fix this and what age should I expect her to have surgery at?
I can't help you with your kidney questions but I will give you some advice that has helped me deal with multiple medical issues. It is a really good idea to journal. Just take a pen and piece of paper and write whatever comes to your mind. Don't edit, don't watch for spelling mistakes, don't try to write complete sentences even. Just let all the stuff that is swimming around in your brain a chance to come out. Because if you keep this all in your head you won't be in any shape to listen to what the urologist is telling you. I would bring a pen and a piece of paper to the appointment to write down what he tells you. If you can bring a friend even better because then you have two sets of ears. The friend can also watch your daughter, or take her out to the reception area if you and the doctor need to talk.
Two weeks seems like forever, but try to take it one day at a time. The good news is if this was a life threatening issue she'd be seeing the urologist right away. The fact this can wait a couple of weeks means it isn't urgent and therefore more likely that your little girl will be okay.
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