5 replies to this topic

[Laura32]

My son is 15 years old. He got transverse myelitis 8 years ago. He's paralyzed from mid chest down. He used to be really good about doing his cath at 3 -4 hr intervals but for about the past year now he hasn't been doing so well - he puts off doing it causing leakage etc. We remind him all the time to do his cath and weight shifts but he'll either put off doing it until it's too late or lie about doing it. Same thing for the weight shifts. He was put in the hospital last summer from these ulcers or bed sores that were caused by him sitting in his own urine for too long and not doing regular weight shifts (he was at camp and they dropped the ball and didn't check etc - looong story) so ever since then, his sore has been tough to heal but it eventually did just that only to be reopened again a few months ago because again, he wasn't doing his cath and weight shifts and then he'd sit in his wet clothes etc. We have tried everything - encouraging him, reminding him and explaining to him the dangers involved with not keeping proper hygiene etc. HELP!

[LeahC]

It's not easy being a teenager, it sounds like he's depressed! I'm not really sure what to suggest though can you take him to the doctors and see about help?

[Laura32]

LeahC, on Jun 11 2009, 05:44 PM, said:

It's not easy being a teenager, it sounds like he's depressed! I'm not really sure what to suggest though can you take him to the doctors and see about help?

We've taken him to the dr's so many times and they speak with him and he "gets" what they are saying and he does well for a while and then gradually he just stops doing it when he's supposed to and then he gets wet and while I understand people have "accidents" - this is a choice on his part and I'm thinking that it has something to do with control. Maybe he feels like he hasn't much control over things in his life and this is one area that he can control? I don't know! But I really appreciate your feedback. I'm new to this site. My sister found it for me and I'm finding it very helpful already. Thanks again.

[CR_L1]

Hi Laura32,
Could it be a problem of embarrassment on your son’s part?
Is he happy self-cathing?
Problems from other peers making fun of his situation.
Have you thought about talking to him & Doctor about using an indwelling catheter, far better option if he is getting sores from sitting in urine.
I think there is an under lying problem here that is causing him to do what he is doing but I don’t have an answer.
You say it may be an issue over control & if he is not talking to you about it perhaps you should consider taking him to see a counsellor.
Being a teenager is not easy at the best of times, it must be a hundred times worse for a teenage para.
I hope you get your son back on track A.S.A.P.
Best wishers,
CR

[Laura32]

Thank you so much for your thoughtful and caring comments.
An indwelling catheter is not something that has ever been suggested if you can believe it but it's definetley something I think is worth looking into. The only issue I see with an indwelling catheter is that it's a gap stop measure if you know what I'm saying - it may be easier and more efficient but I would still like to get to the psychology behind why he's doing what he's doing - or not doing in this case. I know awhile back my son didn't like taking the time away from his friends in order to do his cath. He said that much but as far as I know, the friends he has are very understanding of his situation so I don't believe there is any ridicule or joking about him that is going on. I have tried to get his father to agree to a counsellor but being the alpha male that he is - he doesn't really believe in counselling etc. He feels a military type approach will work best. I couldn't disagree more. I think I may suggest Austin get registered on this site and perhaps then he could see that he's not alone and that there are other teenagers that are dealing with some of the same issues as he is. You're right - being a teenager is tough at the best of times and so having the typical teenager stuff to deal with coupled with his paralysis and lack of mobility really makes it difficult.
I won't lose faith though - never have, never will.
Thanks again for your support.
Laura

[CR_L1]

Just remember some people find it easier to talk to strangers then it is to family of friends, your idea to get him asking questions on the site may be the way to go.
all the best,
CR