My son is 11 and because of a fall at school in March and his back bothering him, he is not walking around.  He can walk when he leans on me, my husband or another person but not for long.  He is just very tight now just can't get up on his own. 

 

At home, he pees in a big cup and it works fine.  He can't stand at the toilet anymore to urinate.  When he left school at the end of last year, the nurse was helping him pull his pants and underwear down and he'd hold on to the bar on the wall or her and go.  This school year he can't do it.  The nurse can still help but his new aide this year, a nice young 23 year old guy is helping him but the also new PT (who has lots of experience with MD and CP) felt he should try a hand held urinal cup.  His aide, at the suggestion of the PT, has him sit on his scooter seat and has him pull his pants off himself, then has him pull over his underwear opening with one hand and hold the urinal in the other.  He's not liking this and is now chosing not to go at school.  He tried it and then didn't hold the urinal correctly and got himself all wet.  (We leave clothes at school in case of accidents).  He finds it very difficult to do both.  He ususally holds the cup at home with two hands and then I dump it when done.

 

I believe they are trying to get him to be independent in this area but I'm not totally agreeing with this one.  He was perfectly "independent" until he could not stand up independtly on his own.  He just wants to get in and go and not go through this "struggle" every day at school.  My son says it's exhausting to go pee now at school.  Short of me going down there very day to help him, any suggestions.  Even the docs in Cinncy last week said they should just give him the cup.  I spoke to the school nurse, who is great, and we'll have a little discussion about it this week to see if we can come to an agreement. 

 

This new PT is great, as is the school in trying to do the best for him,  but I think she is focussing a little too much on these "life skills" and just needs to stretch him well each time she sees him, which is 2X week for one hour each time.

 

Input please.  Thanks.

 

Patti Frank

 

 

 

 

Views: 771

Reply to This

Replies to This Discussion

When Justin stopped walking, he started using a hand held urinal at school. He also stopped wearing underwear and started only wearing pants and shorts that buttoned up the side. He can pull the sides to get them open, he uses the urinal, then covers himself back up. Then, the designated person(aide, nurse, etc) comes in, empties the urinal and buttons the pants back up. Justin likes this set up and its worked well for us for almost 5yrs now.

--Samantha
Where do you get the side button/snap pants or shorts Samantha? thanks.
austin can still stand to pee, although he cant walk at all. he does carry a urinal for tired days, and i would say your son should practice at home until he is able to do it on his own. i suspect this is a skill he will need, or want to have as he gets older. i have heard boys are able to do this at a much older age too. austin doesnt wear underwear either, it works better, less to pull down that way
We use basketball shorts and sweat pants(the nylon material). Some people turn regular jeans into ones with snaps or velcro on the sides, but Justin didnt like them. We get all of ours from any sports store. We live in Texas and have gotten them from Academy Sports, Champion, etc. You can also get brand new ones from ebay. they have allowed Justin to be alot more independant when using the urinal.

--Samantha
Something else to consider would be an external collection system that involves use of a condom catheter and a leg bag. My son started using this method in Jr. high and has ever since, he is now 24. Do not need modified pants, etc. It took him a few days to get used to it but well worth it. Sounds complicated but it is not. You just put it on in the morning when getting dressed and take it off at night when getting ready for bed. The leg bags come in a couple of sizes... it generally straps around the upper calf just below the knee and then at the ankle. Once it is full you empty it from the bottom down by the ankle into a urinal or directly into the toilet. Benefits include: independence throughout the day, no pants up and down, can go several times while in the chair with no disruption of activities, class, etc. no modified clothing, makes boys/young men more comfortable drinking throughout the day since they know they will be able to "go" whenever they need to (helps with hydration and motility), no infection (not an indwelling catheter), most boys/young men can go all day at school without needing to visit the bathroom, but if they do very quick and easy to empty the leg bag, maintains privacy as there is no need to access "private area" except when putting on while getting dressed and taking off at night, etc. Needless to say I am a BIG fan and hope some of you will at least consider. I would by happy to answer any questions you might have.
Do you have any links on the external collection system? Where can we get these catheters? Thank you. Isabel

Katherine M. Reynoldson said:
Something else to consider would be an external collection system that involves use of a condom catheter and a leg bag. My son started using this method in Jr. high and has ever since, he is now 24. Do not need modified pants, etc. It took him a few days to get used to it but well worth it. Sounds complicated but it is not. You just put it on in the morning when getting dressed and take it off at night when getting ready for bed. The leg bags come in a couple of sizes... it generally straps around the upper calf just below the knee and then at the ankle. Once it is full you empty it from the bottom down by the ankle into a urinal or directly into the toilet. Benefits include: independence throughout the day, no pants up and down, can go several times while in the chair with no disruption of activities, class, etc. no modified clothing, makes boys/young men more comfortable drinking throughout the day since they know they will be able to "go" whenever they need to (helps with hydration and motility), no infection (not an indwelling catheter), most boys/young men can go all day at school without needing to visit the bathroom, but if they do very quick and easy to empty the leg bag, maintains privacy as there is no need to access "private area" except when putting on while getting dressed and taking off at night, etc. Needless to say I am a BIG fan and hope some of you will at least consider. I would by happy to answer any questions you might have.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service