Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Marty, had a renal ultrasound done right after birth and it looked fine, but her developmental ped has ordered a follow-up one next month, just to make sure things are still OK there. Also, we're having a nuclear cystogram done immediately after, when they can check to make sure that is emptying her bladder completely and isn't having any kind of kidney or bladder reflux. I don't think you want to wait until she has a urinary tract infection to have this checked out. There can be silent problems there, like reflux, misshaped kidneys, etc., that you may not find out about otherwise. Our tests are scheduled for September 23. I'll let you know how those go. (I feel like 's had more tests and procedures this year than ever before!) , mom to (3 1/2) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Marty: Voiding Cystourethrogram - VCUG for short - this is much more reliable than a simple ultrasound for kidney reflux. Some docs are hesitant to do it if the kiddos are asymptomatic, haven't had UTI's, etc but some kids with CHARGE get UTI's with no symptoms and long term, these can cause more serious kidney problems. I insisted on it for Kennedy when she was a baby. Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Marty, Carmen does not have facial palsy but did have a renal ultrasound and vcug at birth due to her diagnosis and was found to have mild grade II kidney reflux on the left only. Now, at 14 months, she had a vcug to find that she has kidney reflux on both sides, now at Grade III. I would think a baseline renal ultrasound and vcug should be done now and then routine vcug's yearly or so after that depending on what is found. Hope this helps, > > > > > > > Marty here: > > I have a question for you all. I just read in my new CHARGE manual that there is a high correlation between children with facial palsy having renal anomalies as well. Maya has a unilateral facial palsy, and to this point she has not had trouble with her kidneys or bladder (that I know of). she had a renal ultrasound that was normal, BUT I am concerned about her bladder, since it has never been looked at. Once in a while I feel like there is a strong odor to her urine, could her bladder not be emptying completely??? What are your opinions...should I have my doctor oder her a bladder ultrasound? Do I need to wait for her to have a urinary tract infection (I of course don't want to do that)..I just want some advise before Maya's next clinic appointment in October. Thanks everyone. > > Marty, mom to Maya 13month CHARGER > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Aubrie had a VCUG as an infant that showed no reflux. She also had an ultrasound that showed a left pelvic kidney (it just didn't migrate to it's proper spot but it's working fine). She'd never had any symptoms. This was just part of the full CHARGE work-up. A few times when she had fevers as an infant we'd take a urine culture just to be sure and she never had an infection. Michele W Aubrie's mom 7 yrs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 - I would love to know how the tests go. I finally felt like Maya may not need any surgeries or scans for awhile, and then I read the CHARGE manual and realized there may be things her doctors have not looked at yet. I remember in the beginning when they just happened upon some of her anomolies, and I would ask if we should have other tests done and they would reply, " we don't just go looking for problems when we don't have a reason to suspect them. " If they only knew then that Maya had CHARGE. Now that I know so much about CHARGE, I am shocked that these Docs at one of the finest Children's hospitals in the country NEVER mentioned CHARGE to us. Sorry, to ramble, but I am still amazed they did not even think of CHARGE, and they were definitely trying to stick a label on her. Oh well, thanks for the e-mail, Marty, mom to MAYA 13 months Kauffman wrote: Marty, had a renal ultrasound done right after birth and it looked fine, but her developmental ped has ordered a follow-up one next month, just to make sure things are still OK there. Also, we're having a nuclear cystogram done immediately after, when they can check to make sure that is emptying her bladder completely and isn't having any kind of kidney or bladder reflux. I don't think you want to wait until she has a urinary tract infection to have this checked out. There can be silent problems there, like reflux, misshaped kidneys, etc., that you may not find out about otherwise. Our tests are scheduled for September 23. I'll let you know how those go. (I feel like 's had more tests and procedures this year than ever before!) , mom to (3 1/2) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 , How do they do the VCUG? I believe this is the test is having in September, along with the renal ultrasound. They called it a nuclear cystogram (I'm probably botching the spelling of that!), but also said VCUG, so I'm assuming those are one in the same. They're planning to sedate for the VCUG. Just curious as to how it works--I haven't had time to look it up on the Internet yet. , mom to (3 1/2) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 , They insert a catheter into her urethra and inject dye; they then watch to see whether or not she is refluxing urine. The worst part for us was holding Kennedy down to get the catheter in; after that, it wasn't too bad or too lengthy. LIsa Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 think my little cousin had that when she was 8 weeks old she had uti thankfuly she didnt have kydney reflux we dont need to refluxers in the family lol ellen > > , > They insert a catheter into her urethra and inject dye; they then watch to > see whether or not she is refluxing urine. The worst part for us was holding > Kennedy down to get the catheter in; after that, it wasn't too bad or too > lengthy. > LIsa > > > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2005 Report Share Posted August 29, 2005 - Ethan had a VCUG when he was a year old. He didn't have to be sedated (maybe because he was so young). His result came out negative, but they want to do a Pic (spelling) cystogram too on him when he is sedated. I can't remember the difference between the two tests, but we are seeing the urologist in a couple of months and haven't done the cystogram yet. Jody Kauffman wrote: , How do they do the VCUG? I believe this is the test is having in September, along with the renal ultrasound. They called it a nuclear cystogram (I'm probably botching the spelling of that!), but also said VCUG, so I'm assuming those are one in the same. They're planning to sedate for the VCUG. Just curious as to how it works--I haven't had time to look it up on the Internet yet. , mom to (3 1/2) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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