Toileting issues

[GraceUnderPressure]

I mentioned not long ago that my ds18 w/OCD triggered tics has gotten so badly messed up since we recently had a bug go thru the house again that he has been struggling to make it to the bathroom in time & has had several accidents on the carpet - with stains that we have not been able to get all the way out.

 

Needless to say, at his age, this is beyond humiliating for him. I discovered that he has been dealing with it by secretly relieving himself on paper towels & then throwing the stuff in the trash (because the smell was unmistakable). I didn't want to embarrass him further but at the same time there's no way it could continue on as it was because we can't live with the house smelling like that.

 

Then, to make things even more exciting, I have now twice found a wadded up papertowel with poop in it left lying in places around the house where such things have no business being. I had to confront him. The first time he said he set it down because a series of tics hit him before he could throw it away & then he forgot about it (actually by the time the tics ended, he "remembered" that he had already taken care of it). The second time is more scary - he doesn't even remember setting it down. He's really upset as this just further adds to his embarrassment which means that his tics are really going now.

 

(We are still fighting the bug and ds is in an exacerbation - the dr thinks it's a virus. We just seem to keep re-circulating it amongst ourselves & can't get rid of it. I've added elderberry to our OLE & extra C with no luck)

 

Some of you mentioned last time that you were dealing with similar issues with kids whose OCD prevents them from using the toilet so I am desperately hoping that someone here can give me some suggestions for helping him deal with his difficulty in a way that doesn't keep risking our health here...

[smartyjones]

grace -- my son is quite a bit younger - age 6 - but has always had potty issues. when we first tried to potty train, he developed an intense phobia. no one we sought help from would give me credit that this was something different than your average run-of-the-mill power struggle. i knew it was something different.

 

are you using ERP to help with his OCD? forgive that i am not as schooled in OCD as some - perhaps someone else can chime in - there is a type of OCD where it can present like this that it is a type of hoarding but with body fluids, etc. there can be something wrapped up with letting go. i don't know if that fits for him, but do you know what is going on with him not making it to the toilet? could it be that he is actually fighting for it not to occur? is he having some contamination issue with touching the toilet?

 

for us, we used a step by step desensitization from anxietybc.com. my son was peeing on a towel on the bathroom floor. we slowly added a new step each day, moving onto the toilet, cutting the towel to little shreds. he now sits on the toilet and pees on a piece of toilet paper that he then drops into the toilet. eventually, we'll work to drop that but for now -- i just think. . . who knows what people do when they're in there so peeing on the paper doesn't bug me. when we did this, nothing ever came to light that was the problem.

 

check out anxietybc.com for their worksheets or let me know and i can try to help. basically, you'd figure out what he's okay with and that's day one, step one. you pretty much know -- paper towels. maybe you could get some depends or use paper towels if that's good for him. give him that for day one, wherever he's comfortable. maybe day 2, he uses a depends in the bathroom. maybe day 3, he uses a depends while sitting on the toilet. it's going to be tough b/c of the nature of the issue, but see if he can work out with you a plan of how ever many days it takes to get him using the toilet again, in whatever steps he thinks is doable. then stick to the plan. if he fails one day, that's okay - he has two days at that step and moves on the next day. if he can't progress, break it down even smaller, so that he's always doing something even a slight movement. sorry - no pun intended! but thought i'd leave it to try to lighten the mood!

 

i don't know if you'd use rewards for something like this or if using the toilet successfully is reward itself - ? -

[PhillyPA]

Is your son on an antibiotic?

 

I remember when my grandfather did something very similar to that. He was sick. Turned out he had an infection. Maybe your son has a bacterial infection.

[peglem]

Smarty- so glad you had some advice. I was really trying yo think of a way to help. What about those disposable absorbent pads they slip under you in the hospital (well, when I was in labor, anyway.) He could start by using those and disposing of them, then gradually moving closer to the bathroom/toilet.

[Phasmid]

I hate to hear about another child dealing with this. So sorry. I suggest having stool test for Clostridium difficile, just to rule that out. You can PM me about this--- I don't want to post my son's stuff here all over again. But, we have given up hope of a long term cure by antibiotics alone- my son is going to be having IVIG, after six years of dealing with this and other PANDAS symptoms.

 

Mary

[matis_mom]

Goodness! Now I remember about a year ago the trashcan in PANDAS ds's bedroom smelling like that and my poor 6yo took the blame for it! Yikes!

 

Anyhow, I don't have any brilliant advice here except that you may want to cut back on the Vitamin C as it can cause loose stools.

 

My 13yo PANDAS son has had bathroom issues off and on (it only completely went away after the first steroid taper). He was changing constantly and he would wet the bed at night. With CBT (just done at home) we got him to cut back on the number of times he changed, and we settled on pads for the night. I thought he would be totally embarrased when I offered but he readily accepted it as a better alternative than wetting the bed every night. A few weeks ago I guess it was worse and he even asked for "something bigger, more like a diaper" Thankfully it did not last so we are just back to the regular pads older people use for incontinence. At least he gets a good night sleep not having to worry about that.

 

I've heard the case of a child who could not use the bathroom his own parents had used (they were "contaminated"), so maybe for now if he can have a bathroom to himself that would help? Just an idea. Maybe talking to him he will be able to identify what it is that keeps him from using the toilet.

 

Also, I have my boys clean their own bathroom. Hard as it was at times, I never let PANDAS ds off the hook on that. Maybe if your son disinfects the bathroom himself he will be comfortable using it?

 

I am sorry you are going through this. I remember the frustration having to changing sheets every day, doing loads and loads of laundry, etc. It is exhausting to have to deal with this on top of the "mental" stuff.

Edited December 13, 2010 by mati's mom