A couple of weeks ago, Claire had a Urinary Tract Infection. I know plenty of babies who get them. These things happen.
Unfortunately, when they happen to Claire, people take them a little more seriously. You see, Claire has only one working kidney. As a result, her doctors are extra-vigilant whenever something happens with her urinary system. For Claire, this means a round of antibiotics to clear up her UTI followed by a trip to her Urologist.
The Urologist visit was scheduled for today at 11:20, and Brad took her. Despite arriving early, Claire wasn't seen until 12:45, and even then only after Brad walked out into the hallway and asked the doctor how much longer our little six month-old would have to wait.
According to Brad, the urologist came into the exam room, said "Since Claire had a UTI, we might want to do a kidney ultrasound and VCUG" and walked out. He barely examined Claire and didn't leave Brad much time to ask questions.
For those of you who don't know, a VCUG is a study to determine how liquid moves through a person's urinary system. It is usually ordered when a person has frequent UTIs in order to determine the cause of the UTIs. During the study, the person is catheterized and the person's bladder is filled with radiocontrast material. The radiologist watches how the material moves through the bladder to determine whether any material "refluxes" into the person's kidneys. If so, the person is diagnosed with kidney reflux. If the person has kidney reflux, he or she may be at risk for UTIs, so depending on the severity of the reflux, the condition is usually treated with antibiotics to prevent further UTIs.
I'm a little torn on what to do. Do we follow the doctor's suggestion (which seems to have been thrown out and not really well-thought-out) and subject Claire to another test? One that involves catheterization AND an X-Ray? Especially when there's no indication that she has kidney reflux? The doctor told us that he wanted to do it as a preventative measure - with Claire having only one working kidney, we need to do what we can to protect it. However, if there is no indication that her one UTI was caused by kidney reflux, why would we test for reflux?
Am I a bad mom for not wanting to subject my child to another medical test? Especially when I question the necessity of it? I want to do what is best for Claire, but what is best for her? I'm thinking of calling the doctor and asking him these questions, but frankly, I'm not sure I'll get an audience with him, and even if I do, that he'll tell me anything I don't already know.
I would love opinions, thoughts, viewpoints, etc., so feel free to share your perspective in the comments section below.
UTIs are very common even in healthy, typical baby girls. If I were faced with this decision now, I'd wait until she had either another UTI or until I could group the VCUG together with another hospitalization/test/etc. Kidney reflux or no kidney reflux, you're going to treat the UTIs the same, & I know you and Brad will be vigilant for the signs, no matter what, diagnosis or no.
ReplyDeleteBut, like I said, that would be my choice NOW. Three years ago, at the start of our journey, I probably would've gotten the test right away. I value quality of life much more highly now, after putting my baby through so much. I commend you for starting to ask these important questions so soon! regardless of which decision you end up taking. :) Good luck!
I would wait for another UTI and then go with a VCUG. We have plenty of experience with them and they aren't fun BUT easier when they are young. If she has kidney reflux they will probably put her on a profilactic antibiotic to prevent others from occuring and then repeat the VCUG in 6-12 months as kids usually grow out of the reflux. In Carly's case, her's got worse and she had the "Deflux" proceedure and it seems to have eliminated her kidney reflux. Since Claire only has one working kidney I would probably err on the aggressive side of treatment. Gotta keep that one working great!!
ReplyDeleteI vote to listen to your gut which seems to be leaning towards not doing the procedure yet. I think waiting until she has another UTI before you do the VCUG. Is is possible to find another doctor? You, Brad and Claire deserve more attention and respect than that doctor was giving you. Good luck and whatever decision you make will be best.
ReplyDeletePooo..blogger ate my comment. It was a long one too. The main thing I said was that whether you do it or not, it just has to be the right decision for Claire and your family. We decided to do one for matthew shortly after he was born and it did reveal that he did have grade 2reflux. He was on prophalytic antibiotics for a year and when wed re did his VCUG 1 year later it was a transient grade 1..while the doctor recommended keeping him on antibiotics..we decided it was better to take him off. We now just monitor his kidneys (he has cross fusedc right eptopic kidney) yearly with a renal ultrasound. His only bladder infection came after a nurse catheterized him without proper technique. The first urologist wanted to do every test in the book on him so we got a new urologist and have been very happy since...
ReplyDeleteMy advice, as a physician and mom to kid with hx. of reflux related problems is get a second opinion.
ReplyDeleteDon't discount the first doc's opinion just because he was a jerk with no bedside manner...doesn't mean he was wrong. The procedure is a bit of a drag but it could save some serious problems down the road.
I think I saw you were in Atlanta could check out Dr. Edwin Smith- pediatric urologist with Georgia Urology. I went to medical school with him and he was awesome. He took care of my son as well. Tell him "Pam Fried" now Pam Crawford from his medical school class at Emory University is referring you. Just a thought...love him!
ReplyDeleteI would be inclined to wait until she has more than one UTI. Lots of little girls get a UTI, one is not reason enough for the VCUG in my mind. My daughter has had three VCUG's, and they aren't comfortable. She has other bladder issues, but we didn't do the VCUG until she had three UTI's. I understand being proactive but like you said, when is enough enough? My opinion would be wait.
ReplyDeleteI am a big fan of Dr. Charlotte Massad, with Georgia Pediatric Urology. We saw her briefly when were on a wild-goose-chase, but were very happy with her demeanor and attention. I agree that a second opinion might be worthwhile.
ReplyDeleteHow wonderful, the support and knowledge of so many to help you!! We are praying, keep us posted.
ReplyDeleteLove you all!
the v-berg's