Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Thanks . There have been so many notes flying around that I guess I'm getting the names messed up. Sorry about that. Jordan (13 this July with type II) has never walked so he's always had help toileting. I'd describe him as mid-type II as he can still do things like write and play the snare drum in school, but has lost a lot of functions (like throwing a wiffle ball) since his spinal fusion last year and over the past 2 years in general. He's always had an aid to help him get books and things out, and to assist in things like toileting, elevator use, getting his lunch, carrying his in-exsufflator, etc. He's never been real big on the toileting help (I can't blame him), but he's developed a comfort zone with his aid regarding the " tagging along " type stuff. She doesn't tag along, just meets him at the next class, and He tends to minimize fluid intake and hold his bladder as long as he can too, but I've never been real happy about that because everything I've read says both are unhealthy things to do. I wish there was a simple answer. Has anyone seen a bag with a hose that can be strapped to the leg without use of a catheter? That would work great for those little outings with buddies. He's come home with " accidents " (as he describes them) several times. It's embarrassing for him and obviously adds work for us. A secret solution out there would be great! Jay Re: To -mom to mom Jay, Just so we're on same page...my son is Danny (19 with sma 2), not Matt. About the toileting...Danny uses a urinal from his wheelchair. He's been too weak to do it on his own since about age 6. When Danny is out with friends or I'm gone from house, he seems to be able to hold it a long time. He tries to drink less to avoid needing to go too quick when out. The nurse at elementary school and middle school would help him in clinic's restroom, but by 8th gr. he felt uncomfortable with them. Thankfully, I'm a stay at home mom so I would meet him before lunch in the school clinic and take him to restroom. He never had an aide at home or school. Like some of others in group have said, he didn't want someone following him around at school. Now, if he's gonna be somewhere without me for too many hours, I just go by at set time or when he calls me on cell phone for help--then make a quick getaway. I also am lucky that his dad (my ex) lives close enuf to help him out when I'm gone somewhere and unavailable. Sorry, I don't have some secret solution--like everything else, we just adjust as we go. By the way, it's great that Jordan gets out with his buddies without mom. Let me know if I can try to help with anything else. > , > > Matt's strength level sounds very much like my 12 year old son Jordan (type > II). I had a question regarding how you handle toileting when he goes out > with his buddies. This has become a big issue for us. Jordan struggles > with others helping him (I think I would too), but the need to urinate is > obviously a basic bodily function. What do you do when he has to go, and > he's out with his friends? > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 > Has anyone seen a bag with a hose that can be strapped to the leg without > use of a catheter? That would work great for those little outings with > buddies. There is a non-intrusive bag system for men which involves a condom with a hose attached. Its easy to fit and I have several friends who use them all the time with no problems. It has to be better than sitting in a puddle all day. Hope this helps Kev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Kev, Where can I find them? Is there a website or store? Jay RE: Re: To -mom to mom > Has anyone seen a bag with a hose that can be strapped to the leg without > use of a catheter? That would work great for those little outings with > buddies. There is a non-intrusive bag system for men which involves a condom with a hose attached. Its easy to fit and I have several friends who use them all the time with no problems. It has to be better than sitting in a puddle all day. Hope this helps Kev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Pretty standard over here in the UK - and would be supplied by a pharmacist on prescription. I'm sure if you were to ask in a good pharmacy they'd be able to tell you how and where. If you need more info, I can make enquiries - but remember anything I find will be in the UK. Kev > RE: Re: To -mom to mom > > > > Has anyone seen a bag with a hose that can be strapped to the > leg without > > use of a catheter? That would work great for those little outings with > > buddies. > > There is a non-intrusive bag system for men which involves a condom with a > hose attached. Its easy to fit and I have several friends who > use them all > the time with no problems. It has to be better than sitting in a > puddle all > day. > > Hope this helps > Kev > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Thanks! Jay RE: Re: To -mom to mom > > > > Has anyone seen a bag with a hose that can be strapped to the > leg without > > use of a catheter? That would work great for those little outings with > > buddies. > > There is a non-intrusive bag system for men which involves a condom with a > hose attached. Its easy to fit and I have several friends who > use them all > the time with no problems. It has to be better than sitting in a > puddle all > day. > > Hope this helps > Kev > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 Jay, Would jordan consider wearing adult diapers? now i know the first thought for a teenager, and any of us is " NO WAY " but im sure it would take a lot of stress off of him, and he could drink more and not have accidents. Im sure nobody but him would even know they were on. Maybe when he gets older he will feel better asking his friends for help--i really dont think they would mind. i didnt start having my friends help me w/ the restroom until i was about 18. it was definitely more of a big deal for me than them--they didnt mind, and were both girls and friends, so its not too awkward (I dont think i could ask a male friend to help me). jondus@... wrote: Thanks . There have been so many notes flying around that I guess I'm getting the names messed up. Sorry about that. Jordan (13 this July with type II) has never walked so he's always had help toileting. I'd describe him as mid-type II as he can still do things like write and play the snare drum in school, but has lost a lot of functions (like throwing a wiffle ball) since his spinal fusion last year and over the past 2 years in general. He's always had an aid to help him get books and things out, and to assist in things like toileting, elevator use, getting his lunch, carrying his in-exsufflator, etc. He's never been real big on the toileting help (I can't blame him), but he's developed a comfort zone with his aid regarding the " tagging along " type stuff. She doesn't tag along, just meets him at the next class, and He tends to minimize fluid intake and hold his bladder as long as he can too, but I've never been real happy about that because everything I've read says both are unhealthy things to do. I wish there was a simple answer. Has anyone seen a bag with a hose that can be strapped to the leg without use of a catheter? That would work great for those little outings with buddies. He's come home with " accidents " (as he describes them) several times. It's embarrassing for him and obviously adds work for us. A secret solution out there would be great! Jay Re: To -mom to mom Jay, Just so we're on same page...my son is Danny (19 with sma 2), not Matt. About the toileting...Danny uses a urinal from his wheelchair. He's been too weak to do it on his own since about age 6. When Danny is out with friends or I'm gone from house, he seems to be able to hold it a long time. He tries to drink less to avoid needing to go too quick when out. The nurse at elementary school and middle school would help him in clinic's restroom, but by 8th gr. he felt uncomfortable with them. Thankfully, I'm a stay at home mom so I would meet him before lunch in the school clinic and take him to restroom. He never had an aide at home or school. Like some of others in group have said, he didn't want someone following him around at school. Now, if he's gonna be somewhere without me for too many hours, I just go by at set time or when he calls me on cell phone for help--then make a quick getaway. I also am lucky that his dad (my ex) lives close enuf to help him out when I'm gone somewhere and unavailable. Sorry, I don't have some secret solution--like everything else, we just adjust as we go. By the way, it's great that Jordan gets out with his buddies without mom. Let me know if I can try to help with anything else. > , > > Matt's strength level sounds very much like my 12 year old son Jordan (type > II). I had a question regarding how you handle toileting when he goes out > with his buddies. This has become a big issue for us. Jordan struggles > with others helping him (I think I would too), but the need to urinate is > obviously a basic bodily function. What do you do when he has to go, and > he's out with his friends? > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 hi jay, what you need is an external catheter with tubing and pouch. see attachment. alvin Thanks . There have been so many notes flying around that I guess I'm getting the names messed up. Sorry about that. Jordan (13 this July with type II) has never walked so he's always had help toileting. I'd describe him as mid-type II as he can still do things like write and play the snare drum in school, but has lost a lot of functions (like throwing a wiffle ball) since his spinal fusion last year and over the past 2 years in general. He's always had an aid to help him get books and things out, and to assist in things like toileting, elevator use, getting his lunch, carrying his in-exsufflator, etc. He's never been real big on the toileting help (I can't blame him), but he's developed a comfort zone with his aid regarding the " tagging along " type stuff. She doesn't tag along, just meets him at the next class, and He tends to minimize fluid intake and hold his bladder as long as he can too, but I've never been real happy about that because everything I've read says both are unhealthy things to do. I wish there was a simple answer. Has anyone seen a bag with a hose that can be strapped to the leg without use of a catheter? That would work great for those little outings with buddies. He's come home with " accidents " (as he describes them) several times. It's embarrassing for him and obviously adds work for us. A secret solution out there would be great! Jay Re: To -mom to mom Jay, Just so we're on same page...my son is Danny (19 with sma 2), not Matt. About the toileting...Danny uses a urinal from his wheelchair. He's been too weak to do it on his own since about age 6. When Danny is out with friends or I'm gone from house, he seems to be able to hold it a long time. He tries to drink less to avoid needing to go too quick when out. The nurse at elementary school and middle school would help him in clinic's restroom, but by 8th gr. he felt uncomfortable with them. Thankfully, I'm a stay at home mom so I would meet him before lunch in the school clinic and take him to restroom. He never had an aide at home or school. Like some of others in group have said, he didn't want someone following him around at school. Now, if he's gonna be somewhere without me for too many hours, I just go by at set time or when he calls me on cell phone for help--then make a quick getaway. I also am lucky that his dad (my ex) lives close enuf to help him out when I'm gone somewhere and unavailable. Sorry, I don't have some secret solution--like everything else, we just adjust as we go. By the way, it's great that Jordan gets out with his buddies without mom. Let me know if I can try to help with anything else. > , > > Matt's strength level sounds very much like my 12 year old son Jordan (type > II). I had a question regarding how you handle toileting when he goes out > with his buddies. This has become a big issue for us. Jordan struggles > with others helping him (I think I would too), but the need to urinate is > obviously a basic bodily function. What do you do when he has to go, and > he's out with his friends? > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2002 Report Share Posted May 22, 2002 So the aid takes the cough machine wherever he goes, and she's the one to use it if he needs it? 05 PM 5/22/02 -0700, you wrote: > Jay, >Would jordan consider wearing adult diapers? now i know the first >thought for a teenager, and any of us is " NO WAY " but im sure it would >take a lot of stress off of him, and he could drink more and not have >accidents. Im sure nobody but him would even know they were on. Maybe >when he gets older he will feel better asking his friends for help--i >really dont think they would mind. i didnt start having my friends help >me w/ the restroom until i was about 18. it was definitely more of a big >deal for me than them--they didnt mind, and were both girls and friends, >so its not too awkward (I dont think i could ask a male friend to help me). > > jondus@... wrote: Thanks . There have been so many notes > flying around that I guess I'm >getting the names messed up. Sorry about that. Jordan (13 this July with >type II) has never walked so he's always had help toileting. I'd describe >him as mid-type II as he can still do things like write and play the snare >drum in school, but has lost a lot of functions (like throwing a wiffle >ball) since his spinal fusion last year and over the past 2 years in >general. He's always had an aid to help him get books and things out, and >to assist in things like toileting, elevator use, getting his lunch, >carrying his in-exsufflator, etc. He's never been real big on the toileting >help (I can't blame him), but he's developed a comfort zone with his aid >regarding the " tagging along " type stuff. She doesn't tag along, just meets >him at the next class, and He tends to minimize fluid intake and hold his >bladder as long as he can too, but I've never been real happy about that >because everything I've read says both are unhealthy things to do. I wish >there was a simple answer. > >Has anyone seen a bag with a hose that can be strapped to the leg without >use of a catheter? That would work great for those little outings with >buddies. He's come home with " accidents " (as he describes them) several >times. It's embarrassing for him and obviously adds work for us. > >A secret solution out there would be great! > >Jay > > Re: To -mom to mom > > >Jay, >Just so we're on same page...my son is Danny (19 with sma 2), not >Matt. About the toileting...Danny uses a urinal from his wheelchair. >He's been too weak to do it on his own since about age 6. When Danny >is out with friends or I'm gone from house, he seems to be able to >hold it a long time. He tries to drink less to avoid needing to go >too quick when out. The nurse at elementary school and middle school >would help him in clinic's restroom, but by 8th gr. he felt >uncomfortable with them. Thankfully, I'm a stay at home mom so I >would meet him before lunch in the school clinic and take him to >restroom. He never had an aide at home or school. Like some of others >in group have said, he didn't want someone following him around at >school. Now, if he's gonna be somewhere without me for too many >hours, I just go by at set time or when he calls me on cell phone for >help--then make a quick getaway. I also am lucky that his dad (my ex) >lives close enuf to help him out when I'm gone somewhere and >unavailable. Sorry, I don't have some secret solution--like >everything else, we just adjust as we go. >By the way, it's great that Jordan gets out with his buddies without >mom. Let me know if I can try to help with anything else. > > > > > , > > > > Matt's strength level sounds very much like my 12 year old son >Jordan (type > > II). I had a question regarding how you handle toileting when he >goes out > > with his buddies. This has become a big issue for us. Jordan >struggles > > with others helping him (I think I would too), but the need to >urinate is > > obviously a basic bodily function. What do you do when he has to >go, and > > he's out with his friends? > > > > Jay > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Not exactly. It's usually the school nurse. Jordan doesn't have the automatic cough machine, he has the unit with the manual valve. It's so simple to use that we showed his aide how to use it, as well as the school nurse. Typically, first thing in the morning the aide gets him off the bus and takes the machine to the nurse's office where it stays for the day. If he feels he needs it, he asks to go to the nurse's office and the nurse usually runs it. However, his aide can run it if necessary. All it takes is plugging it in, turn it on, and sliding the valve with a little timing. After they do it once or twice they are no longer afraid of it. Jay Re: To -mom to mom > > >Jay, >Just so we're on same page...my son is Danny (19 with sma 2), not >Matt. About the toileting...Danny uses a urinal from his wheelchair. >He's been too weak to do it on his own since about age 6. When Danny >is out with friends or I'm gone from house, he seems to be able to >hold it a long time. He tries to drink less to avoid needing to go >too quick when out. The nurse at elementary school and middle school >would help him in clinic's restroom, but by 8th gr. he felt >uncomfortable with them. Thankfully, I'm a stay at home mom so I >would meet him before lunch in the school clinic and take him to >restroom. He never had an aide at home or school. Like some of others >in group have said, he didn't want someone following him around at >school. Now, if he's gonna be somewhere without me for too many >hours, I just go by at set time or when he calls me on cell phone for >help--then make a quick getaway. I also am lucky that his dad (my ex) >lives close enuf to help him out when I'm gone somewhere and >unavailable. Sorry, I don't have some secret solution--like >everything else, we just adjust as we go. >By the way, it's great that Jordan gets out with his buddies without >mom. Let me know if I can try to help with anything else. > > > > > , > > > > Matt's strength level sounds very much like my 12 year old son >Jordan (type > > II). I had a question regarding how you handle toileting when he >goes out > > with his buddies. This has become a big issue for us. Jordan >struggles > > with others helping him (I think I would too), but the need to >urinate is > > obviously a basic bodily function. What do you do when he has to >go, and > > he's out with his friends? > > > > Jay > > > > > Quote Link to comment Share on other sites More sharing options...
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