Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Colleen, It was very difficult to toilet train ...because he was a boy or CHARGE...not really sure...Many times I wanted to give up...especially the last time...he had an accident every day...I really wanted to give up...Then has a totally good day, then another before I knew it it was a whole week..and then the week later he was dry all night...Something clicked...I guess knew I was ready to give up...he has now had no accidents knock on wood...even when he has had surgery...the nurse told him he could go to the bathroom in the portable urinal..he told her no he has to use the real bathroom...She had to scoot him to the bathroom..but he did it...I have no sure fire way to help .... had every book and video..We took special shopping trips just to find really cool underwear...And dare I say I tried to bribe him with whatever he wanted... it seemed nothing worked...then he just did it...His pediatrician said I told you the would when he was good and ready....UGH!!!... has been potty trained for over 4 years now Good luck!!! Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Colleen, It was very difficult to toilet train ...because he was a boy or CHARGE...not really sure...Many times I wanted to give up...especially the last time...he had an accident every day...I really wanted to give up...Then has a totally good day, then another before I knew it it was a whole week..and then the week later he was dry all night...Something clicked...I guess knew I was ready to give up...he has now had no accidents knock on wood...even when he has had surgery...the nurse told him he could go to the bathroom in the portable urinal..he told her no he has to use the real bathroom...She had to scoot him to the bathroom..but he did it...I have no sure fire way to help .... had every book and video..We took special shopping trips just to find really cool underwear...And dare I say I tried to bribe him with whatever he wanted... it seemed nothing worked...then he just did it...His pediatrician said I told you the would when he was good and ready....UGH!!!... has been potty trained for over 4 years now Good luck!!! Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Colleen, It was very difficult to toilet train ...because he was a boy or CHARGE...not really sure...Many times I wanted to give up...especially the last time...he had an accident every day...I really wanted to give up...Then has a totally good day, then another before I knew it it was a whole week..and then the week later he was dry all night...Something clicked...I guess knew I was ready to give up...he has now had no accidents knock on wood...even when he has had surgery...the nurse told him he could go to the bathroom in the portable urinal..he told her no he has to use the real bathroom...She had to scoot him to the bathroom..but he did it...I have no sure fire way to help .... had every book and video..We took special shopping trips just to find really cool underwear...And dare I say I tried to bribe him with whatever he wanted... it seemed nothing worked...then he just did it...His pediatrician said I told you the would when he was good and ready....UGH!!!... has been potty trained for over 4 years now Good luck!!! Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Boy, Colleen, and my son must be twins separated at birth! He also eats very little and only certain things. Although he is toilet trained for the most part, I have to get on his case to go to the bathroom, because it is RARE when he will go on his own. With the advice of his pediatric urologist, we had him on an hourly toileting schedule. We would take him to the bathroom every hour. BMs were no problem, though; he has an anteriorly placed anus, which makes defecating for him...not painful, but noticeable! He also does not like doing it, so he will kind of sit there and make these " Lamaze breathing " sounds like he's in labor. That's when we go, " ! Get in that bathroom! " and he goes running, sits down and lo and behold! LOL! However, urinating is another thing. He often will get so caught up in what he is doing that he will just keep on what he is doing until he pees in his pants. So we now have a routine: when he gets up in the morning, he goes to the bathroom. Before he gets on the bus he goes again. Once he gets to school, he goes again. They know that they have to take him every two hours and he goes right before he gets on the bus. When he gets home, he goes again. After dinner, again then before he showers at night, he goes again then again before bed. We try to keep this same schedule as much as possible, though weekends are harder. But, since he cannot sense for himself when he has to go, at least he can correlate toileting with certain events, and that is better than wetting himself. I am not sure why he cannot sense it himself. Often when he gets mad or upset, he will say he has to go to the bathroom and does, but other times he won't. I hope this helps you! I know Pull-ups are expensive and Medicaid wouldn't pay for them. You might want to try regular underwear. Just like toileting any other child, they *usually* don't like the feeling of wearing something wet and Pull-ups just absorb all that wetness. Plus it'll save you money (although you may make up for it in laundry costs!!). But it is worth a try. Good luck and let us know how it goes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 One more thing: it might be helpful to keep a toileting chart/journal (this is helpful for school, too). You can chart the times that goes to the toilet and mark down when she has an accident as well. You might detect a pattern from this, such as certain times of the day or stressful events or transitions in school (like changing classes, coming in from recess, etc.). I'm not sure how verbal she is, but this might help you discern things about her accidents she might not be able to communicate to you. used to wet himself everytime he went into the cafeteria and the teachers didn't know why. They finally tried having him eat lunch in the classroom with his classmates and he stopped wetting himself. We all agreed that it must be the chaos and noise and crowds which stressed him out. He was gradually weaned back into the cafeteria and the episodes stopped happening altogether. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 One more thing: it might be helpful to keep a toileting chart/journal (this is helpful for school, too). You can chart the times that goes to the toilet and mark down when she has an accident as well. You might detect a pattern from this, such as certain times of the day or stressful events or transitions in school (like changing classes, coming in from recess, etc.). I'm not sure how verbal she is, but this might help you discern things about her accidents she might not be able to communicate to you. used to wet himself everytime he went into the cafeteria and the teachers didn't know why. They finally tried having him eat lunch in the classroom with his classmates and he stopped wetting himself. We all agreed that it must be the chaos and noise and crowds which stressed him out. He was gradually weaned back into the cafeteria and the episodes stopped happening altogether. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 One more thing: it might be helpful to keep a toileting chart/journal (this is helpful for school, too). You can chart the times that goes to the toilet and mark down when she has an accident as well. You might detect a pattern from this, such as certain times of the day or stressful events or transitions in school (like changing classes, coming in from recess, etc.). I'm not sure how verbal she is, but this might help you discern things about her accidents she might not be able to communicate to you. used to wet himself everytime he went into the cafeteria and the teachers didn't know why. They finally tried having him eat lunch in the classroom with his classmates and he stopped wetting himself. We all agreed that it must be the chaos and noise and crowds which stressed him out. He was gradually weaned back into the cafeteria and the episodes stopped happening altogether. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Colleen!! Our daughter was able to give up diapers when she was 10 years old at the same time as the Boston conference in 1997. She took her first airplane ride to Boston from the west coast and used toilets in airplanes and airports from Oregon to Arizona, to Ohio and Boston!! We were astonished. We attribute the success to having been to the HANDLE institute one month prior to the conference. For Kendra, the sphincter exercises helped immeasurably. From that time forward she has not worn day-time diapers and has had less than 5 'accidents' in the daytime since that time 9 years ago. She was also able to improve her eating enough following the HANDLE exercises to have her g-tube removed within the year. The HANDLE exercises were a big help in our case. Other factors were instrumental as well, but the lion's share of our thanks goes to the HANDLE institute for those two dramatic gains. > > Hello everyone! > I am on yet another information finding mission. Are there any kids out there who just cannot get the toiletting thing? My daughter is 8 and still wears pull ups to school. This week she's had about 3-4 accidents per day. And forget about night time! She was doing better for a bit but now we are in this valley and I'm not sure where to go from here. She also does not want to eat...although she does eat purees and mashed foods. Just looking for some of your thoughts!! Thanks!! > Colleen > Mom to , 8, power walker. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi Colleen!! Our daughter was able to give up diapers when she was 10 years old at the same time as the Boston conference in 1997. She took her first airplane ride to Boston from the west coast and used toilets in airplanes and airports from Oregon to Arizona, to Ohio and Boston!! We were astonished. We attribute the success to having been to the HANDLE institute one month prior to the conference. For Kendra, the sphincter exercises helped immeasurably. From that time forward she has not worn day-time diapers and has had less than 5 'accidents' in the daytime since that time 9 years ago. She was also able to improve her eating enough following the HANDLE exercises to have her g-tube removed within the year. The HANDLE exercises were a big help in our case. Other factors were instrumental as well, but the lion's share of our thanks goes to the HANDLE institute for those two dramatic gains. > > Hello everyone! > I am on yet another information finding mission. Are there any kids out there who just cannot get the toiletting thing? My daughter is 8 and still wears pull ups to school. This week she's had about 3-4 accidents per day. And forget about night time! She was doing better for a bit but now we are in this valley and I'm not sure where to go from here. She also does not want to eat...although she does eat purees and mashed foods. Just looking for some of your thoughts!! Thanks!! > Colleen > Mom to , 8, power walker. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Colleen, I didn't want to say anything on the list too soon but; MacKenzie (also almost 8), woke up 2 weeks ago and just started going to the toilet. She had still been in pull ups and I really had not bothered with training for some time. She's still only peeing, saying pooping on the toilet is " gross " , but it's a start. A rather surprising start! This pattern is actually typical for her. We spend eons trying to get her to do something,(walk, eat, talk), we give up, and then BAM, she does it. Talk about a control queen. Anyway, don't get too down about it, these 8 year old CHARGE girlies have their own agenda. Lots of luck Jeanie Colp mom to MacKenzie CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Colleen, I didn't want to say anything on the list too soon but; MacKenzie (also almost 8), woke up 2 weeks ago and just started going to the toilet. She had still been in pull ups and I really had not bothered with training for some time. She's still only peeing, saying pooping on the toilet is " gross " , but it's a start. A rather surprising start! This pattern is actually typical for her. We spend eons trying to get her to do something,(walk, eat, talk), we give up, and then BAM, she does it. Talk about a control queen. Anyway, don't get too down about it, these 8 year old CHARGE girlies have their own agenda. Lots of luck Jeanie Colp mom to MacKenzie CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Colleen, I didn't want to say anything on the list too soon but; MacKenzie (also almost 8), woke up 2 weeks ago and just started going to the toilet. She had still been in pull ups and I really had not bothered with training for some time. She's still only peeing, saying pooping on the toilet is " gross " , but it's a start. A rather surprising start! This pattern is actually typical for her. We spend eons trying to get her to do something,(walk, eat, talk), we give up, and then BAM, she does it. Talk about a control queen. Anyway, don't get too down about it, these 8 year old CHARGE girlies have their own agenda. Lots of luck Jeanie Colp mom to MacKenzie CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 yay mack > > Colleen, > I didn't want to say anything on the list too soon but; MacKenzie (also > almost 8), woke up 2 weeks ago and just started going to the toilet. She > had > still been in pull ups and I really had not bothered with training for > some > time. She's still only peeing, saying pooping on the toilet is " gross " , > but > it's a start. A rather surprising start! This pattern is actually typical > for her. We spend eons trying to get her to do something,(walk, eat, > talk), > we give up, and then BAM, she does it. Talk about a control queen. Anyway, > don't get too down about it, these 8 year old CHARGE girlies have their > own > agenda. > > Lots of luck > Jeanie Colp > mom to MacKenzie CHARGE, Tyler 14 & Zachary 11 > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 yay mack > > Colleen, > I didn't want to say anything on the list too soon but; MacKenzie (also > almost 8), woke up 2 weeks ago and just started going to the toilet. She > had > still been in pull ups and I really had not bothered with training for > some > time. She's still only peeing, saying pooping on the toilet is " gross " , > but > it's a start. A rather surprising start! This pattern is actually typical > for her. We spend eons trying to get her to do something,(walk, eat, > talk), > we give up, and then BAM, she does it. Talk about a control queen. Anyway, > don't get too down about it, these 8 year old CHARGE girlies have their > own > agenda. > > Lots of luck > Jeanie Colp > mom to MacKenzie CHARGE, Tyler 14 & Zachary 11 > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 lol yup. I think for me i stopped having accidents between kindergarden and grade 1. way to go mac! Hugs Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 lol yup. I think for me i stopped having accidents between kindergarden and grade 1. way to go mac! Hugs Chantelle Quote Link to comment Share on other sites More sharing options...
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