Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Sounds like they need to keep the video on him until he urinates. Obviously he will need to go eventually. Maybe they could schedule with this in mind? My kids have always urinated right away after their bladders were filled with the contrast. Cheryl, , (7), (5, CHaRGE) MI >>> rachelle.cote@... 10/02/00 12:26PM >>> Hi, I just wanted to ask everyone if they've ever had a problem when getting the VCUG done for their child. We have attempted twice to do this test, and both times, Caleb refused to pee afterwards. The first time, they only put in about 75 ml of dye, and after 3 hours, he never peed. The next week, they filled his bladder until we could actually feel how full it was. They put in 325 ml of dye, and he was crying because his bladder hurt so much since it was so full. Needless to say, after waiting 2 hours, he didn't pee. When he did release some once (just a squirt), he was very obviously in pain. Caleb has always been easy on diapers. He often has dry diapers at the end of the day, or even when he gets up in the morning. He has always easily gone 8 hours with a dry diaper, even though he was drinking. I wonder if we have inadvertently stumbled onto something else with him holding on to his pee so much. It certainly can't be good for UTI's. Anyway, if anyone else has experienced this and knows what it means, I sure could use some advice right now. I still don't know how we're going to get this VCUG done if he won't pee. Thanks. le Mom to Caleb, 27 month old CHARGEr, and (almost 4) " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 le, Well, it sounds to me that if he held all that dye in his bladder and it didi not relux back to his bladder than you can be pretty darn sure that you don't need another VCUG. Did it show backflow to the kidneys as he held the p[ee in that long?? Sounds like relux is NOT his problem if that's the case. Foley Mom to , jacob and Jillian PS... A friend of mone had a daughter with this problem. I will ask her what they did for her. She always had UTI's but it was not reflux. Sounds the same as Caleb. VCUG > Hi, > I just wanted to ask everyone if they've ever had a problem when getting > the VCUG done for their child. We have attempted twice to do this test, > and both times, Caleb refused to pee afterwards. The first time, they > only put in about 75 ml of dye, and after 3 hours, he never peed. The > next week, they filled his bladder until we could actually feel how full > it was. They put in 325 ml of dye, and he was crying because his > bladder hurt so much since it was so full. Needless to say, after > waiting 2 hours, he didn't pee. When he did release some once (just a > squirt), he was very obviously in pain. > Caleb has always been easy on diapers. He often has dry diapers at > the end of the day, or even when he gets up in the morning. He has > always easily gone 8 hours with a dry diaper, even though he was > drinking. I wonder if we have inadvertently stumbled onto something > else with him holding on to his pee so much. It certainly can't be good > for UTI's. > Anyway, if anyone else has experienced this and knows what it means, > I sure could use some advice right now. I still don't know how we're > going to get this VCUG done if he won't pee. > Thanks. > le > Mom to Caleb, 27 month old CHARGEr, and (almost 4) > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Cheryl, V. here Mark's Mom, we are off to the urologist again today due to Marks frequent urination and incontinence. I don't know what will be next but having this problem develop at this stage is very frustrating. He turned 17 on the 21st. I sure wish he could tell me a thing or two! V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hi! It is my understanding that the reflux occurs during the act of voiding urine so I do NOT think that you can make assumptions without visualizing him emptying his bladder during a VCUG. Cheryl, , (7), (5, CHaRGE) MI >>> 3jefmom@... 10/03/00 07:25AM >>> le, Well, it sounds to me that if he held all that dye in his bladder and it didi not relux back to his bladder than you can be pretty darn sure that you don't need another VCUG. Did it show backflow to the kidneys as he held the p[ee in that long?? Sounds like relux is NOT his problem if that's the case. Foley Mom to , jacob and Jillian PS... A friend of mone had a daughter with this problem. I will ask her what they did for her. She always had UTI's but it was not reflux. Sounds the same as Caleb. VCUG > Hi, > I just wanted to ask everyone if they've ever had a problem when getting > the VCUG done for their child. We have attempted twice to do this test, > and both times, Caleb refused to pee afterwards. The first time, they > only put in about 75 ml of dye, and after 3 hours, he never peed. The > next week, they filled his bladder until we could actually feel how full > it was. They put in 325 ml of dye, and he was crying because his > bladder hurt so much since it was so full. Needless to say, after > waiting 2 hours, he didn't pee. When he did release some once (just a > squirt), he was very obviously in pain. > Caleb has always been easy on diapers. He often has dry diapers at > the end of the day, or even when he gets up in the morning. He has > always easily gone 8 hours with a dry diaper, even though he was > drinking. I wonder if we have inadvertently stumbled onto something > else with him holding on to his pee so much. It certainly can't be good > for UTI's. > Anyway, if anyone else has experienced this and knows what it means, > I sure could use some advice right now. I still don't know how we're > going to get this VCUG done if he won't pee. > Thanks. > le > Mom to Caleb, 27 month old CHARGEr, and (almost 4) > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hi ! Hope you get some answers on this soon!!! Cheryl, , (7), (5, CHaRGE) MI >>> Kav810@... 10/03/00 11:41AM >>> Cheryl, V. here Mark's Mom, we are off to the urologist again today due to Marks frequent urination and incontinence. I don't know what will be next but having this problem develop at this stage is very frustrating. He turned 17 on the 21st. I sure wish he could tell me a thing or two! V. " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Hi, As far as I know, reflux can only be visualized after the bladder has emptied. So we cannot rule out the possibility of reflux for him. He has been referred to a urologist, and I am hoping we can find out what's going on. Thanks. le Cheryl Swenson wrote: > Hi! > It is my understanding that the reflux occurs during the act of voiding urine so I do NOT think that you can make assumptions without visualizing him emptying his bladder during a VCUG. > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> 3jefmom@... 10/03/00 07:25AM >>> > le, > > Well, it sounds to me that if he held all that dye in his bladder and it > didi not relux back to his bladder than you can be pretty darn sure that you > don't need another VCUG. Did it show backflow to the kidneys as he held the > p[ee in that long?? Sounds like relux is NOT his problem if that's the case. > > Foley > Mom to , jacob and Jillian > PS... A friend of mone had a daughter with this problem. I will ask her what > they did for her. She always had UTI's but it was not reflux. Sounds the > same as Caleb. > VCUG > > > Hi, > > I just wanted to ask everyone if they've ever had a problem when getting > > the VCUG done for their child. We have attempted twice to do this test, > > and both times, Caleb refused to pee afterwards. The first time, they > > only put in about 75 ml of dye, and after 3 hours, he never peed. The > > next week, they filled his bladder until we could actually feel how full > > it was. They put in 325 ml of dye, and he was crying because his > > bladder hurt so much since it was so full. Needless to say, after > > waiting 2 hours, he didn't pee. When he did release some once (just a > > squirt), he was very obviously in pain. > > Caleb has always been easy on diapers. He often has dry diapers at > > the end of the day, or even when he gets up in the morning. He has > > always easily gone 8 hours with a dry diaper, even though he was > > drinking. I wonder if we have inadvertently stumbled onto something > > else with him holding on to his pee so much. It certainly can't be good > > for UTI's. > > Anyway, if anyone else has experienced this and knows what it means, > > I sure could use some advice right now. I still don't know how we're > > going to get this VCUG done if he won't pee. > > Thanks. > > le > > Mom to Caleb, 27 month old CHARGEr, and (almost 4) > > > > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > > 20-22, 2001. Information will be available first in CHARGE Accounts, the > > CHARGE Syndrome Foundation's newsletter. " > > > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 le My child probably holds the record for holding " it " in. Caitlyn can go before bedtime at 7pm and go all night without an accident and in the morning when most people have to pee immediately--Caitlyn? Nope! She can hold it until the afternoon all the way from the previous evening--16 hours! And that's drinking normally and all. On all of her kidney sonograms her left kidney is enlarged. This was blown off as meaningless until her VCUG when not only did Caitlyn show reflux but also a difficulty emptying her left kidney due to a mild obstruction (UPJ obstruction). The dr feels that this obstruction is very likely what has caused Caitlyn's periodic episodes of very severe abdominal pain (colic-type crying that exists to this day). So given what you're saying, I would suggest the docs do a sonogram to see what her kidneys look like. CHARGErs need their kidneys checked anyway because of the renal abnormalities anyway. If the sonogram shows nothing, I would suggest you get a child life specialist to come down and help your child relax during the test. Ours was great. Ours was kicked out when the test began but he helped Caitlyn relax while the cath was placed. Due to the difficulties you're having doing the test, maybe radiology would make an exception and let the child life specialist stay during the test. Jeanne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.