Incontinence

iVillage Member
Registered: 09-24-2003
Incontinence
15
Fri, 03-07-2008 - 7:08am

My daughter has ADHD, ODD and tons of Asperger's tendencies, but not enough to give her a diagnosis.

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iVillage Member
Registered: 06-25-2003
In reply to: judi_d
Fri, 03-07-2008 - 8:49am

Hello and welcome.

I remember reading a lot about this on the ADHD board when I used to lurk there, but it is not something which comes up here a lot.

Some people here may have more input, but if I were you, I would cross-post on the ADHD board.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-07-2003
In reply to: judi_d
Fri, 03-07-2008 - 10:01am

My 13yo AS dd has had some similar problems with not caring whether she was wet/soiled. The bad part is that we have yet to find ANY consequence -- positive or negative -- to motivate dd when she doesn't want to be motivated. The good part is that with your dd, more of it may be physical than you realize. Fortunately for us, my dd has improved with the daytime wetting and even finally wanting to be a little less smelly, but it's still a work-in-progress.

Your urologist is correct that overfull bowels can make the bladder issues worse. Regardless of WHY your dd has the bowel issues (withholding, poor bowel motility, etc), the problem needs to be addressed. She first needs to have an abdominal x-ray to see whether her bowels ARE, in fact, overfull. Many doctors will try to feel/palpate the belly to do this, but that is NOT, NOT, NOT an accurate indicator of how much stool is in the intestinal tract. ONLY an x-ray will provide an accurate picture of the problem.

When the bowels get overfull, they get stretched out and lose muscle tone. This makes it harder to control the bowel movements and often results in soiling (either splats or full blown accidents). This condition is called encopresis.

If your dd does have bowel problems, then she will need to be put on a daily regimen of non-stimulant laxatives, such as Miralax, to keep her stool soft and eliminated regularly so her bowels can shrink back to normal size and regain muscle tone. Stimulant laxatives force bowel contractions and are not recommended for daily use since the body can become dependent on them, but non-stimulant laxatives merely help hold water in the stool to prevent it from getting too dry/hard and hung up in the intestinal tract. They are safe for long-term daily use (years, even).

Once the pressure from the bowels is off the bladder, that should hopefully help the bladder problems to some degree.

Although your dd says she can tell when she needs to use the toilet, how long in advance can she tell? Can she feel the pressure building, or does she not know until 10-seconds before-hand? With my dh and two AS kids, they get very little sensory notice that they need to use the toilet. So, even though they "know" they need to use the toilet, they don't have much time to stop what they're doing to actually do so. Fortunately they don't usually have full blown accidents, but they do have semi-regular damp spots on their clothes.

With your dd ODD, I don't know whether this would help, but you could try getting her a vibrating wristwatch or timer to prompt her when to go to the bathroom. Also have her try leaning forward when urinating to make sure she fully empties the bladder. Have the docs checked for any kind of kidney reflux or any other medical problems that might be causing the wetting?

It's just been in the past year or so that my dd has started to show any kind of interest in her hygiene. She still has a ways to go, but she IS better than she was before. Hopefully your dd will "bloom" before long as well.

I hope this has helped.

iVillage Member
Registered: 04-08-2007
In reply to: judi_d
Fri, 03-07-2008 - 12:18pm

I wanted to add to the pp that I know two brothers with HFA/Asperger's that had a problem with accidents well into junior high - not all of the time but often enough that other kids were aware of the problem. The family found that both boys had tethered spinal cords and had surgery to correct the issue. I had never heard of that issue, so thought I would pass it on.

Rule out medical issues (my daughter nt had reflux and would have "little leaks" prior to surgery when she was 7, but no issues since).

The only thing that will get my son (adhd) to change annoying behavior, is the threat of losing his ds or computer time, so with your dd that is probably what I would try. Have you worked with a psych on this? Sometimes, psychologists can help you structure some kind of reward/behavior mod program.

iVillage Member
Registered: 01-19-2005
In reply to: judi_d
Fri, 03-07-2008 - 1:02pm

I just wanted to reiterate what hwife said.

iVillage Member
Registered: 04-07-2003
In reply to: judi_d
Fri, 03-07-2008 - 1:22pm

The docs have ruled out tethered cord with dd, but I appreciate your mentioning it. I've learned more about dd problems from other moms on iVillage than I have from the docs (tho' the docs have confirmed everything I've learned).

Dd was actually supposed to be in the hospital now getting a couple of tests done (anal manometry & colorectal manometry) to check her muscle tone and to see whether she has any non-performing segments of her intestinal tract. Unfortunately the doc & office staff didn't listen to me and scheduled the surgery at a hospital where insurance wouldn't cover the procedure, insisting everything was taken care of. I KNEW they weren't listening, so at EVERY conversation I repeated that we couldn't have the procedures at hospital #1 'cus insurance wouldn't cover it, we HAD to have procedure at hosp #2.

The day before dd was to be admitted, the billings dept called to let me know that insurance wouldn't cover this and that I was going to end up with a multi-thousands dollar bill from this procedure. I had to cancel. I'm irritated as all get-out that I've wasted tons of time and money having appts and coordinating the hospitalization with a doc who can't actually help me. I explained from the outset what our limitations were, and he always said it would be okay and that we could do work at hospital #2. (The doctor appts were over $700 each, and I get billed a percentage of that.) Grrr. In addition to the appts with the doc, we also had to have a pre-surgery physical and blood work done in preparation for the hospitalization and procedures. That's all been wasted time/money, too, since the results are only good for about a week before any hospitalization.

Dd has another appt at the end of the month with another doc who is supposed to be covered by our insurance as well as having hospital privileges at locations our insurance will cover. I hope so. Dd asked me this week whether we'd figure out what was wrong with her bowels before she was 18yrs. I hope so, but we've been working on it for 13yrs with no success so far!

I hope the original poster can get help from her psych, but despite multiple efforts, our psych was never able to help us find any motivational approaches for my kids. Before we found out that the kids and dh had AS, I'd not so kindly coined the phrase that "anything worth doing is too much effort." For instance, my kids/dh would rather shiver and be cold all night long rather than roll over and pick up their blanket that fell to the floor. They all say they KNOW they could pick it up and that shivering is uncomfortable, but they just didn't feel like going to the effort of picking up the blanket. I don't know how you work with that. When someone doesn't like to be uncomfortable but would rather BE uncomfortable rather than exert an ounce of effort, I don't know what to do, especially for bigger issues like not sitting in their own filth.

I guess this is where I be grateful that some of their other problems aren't as profound since this part is plenty enough for me to deal with!

iVillage Member
Registered: 04-08-2007
In reply to: judi_d
Fri, 03-07-2008 - 1:52pm

I totally hear you, and am sorry for what you are going through. I haven't really had much help from a psychologist in setting up a behavior plan, except to help me I suppose understand that HE has to be motivated to change whatever it is, which it the underlying problem. At this point, taking away the ds and computer is working - I just wish it could be a positive reward we work towards, rather than a negative consequence - but whatever works.

Thankfully, you are on top of things for your kids, but I get so tired of having to fight the fight, and be the only one who can track all the details - I can tell you get that!
I am sending you cyber coffee and cookies - or wine and crackers - depending on the time!

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iVillage Member
Registered: 03-27-2003
In reply to: judi_d
Fri, 03-07-2008 - 2:47pm

I wish there was a "right there with ya sister" icon!

<<<<< Before we found out that the kids and dh had AS, I'd not so kindly coined the phrase that "anything worth doing is too much effort." For instance, my kids/dh would rather shiver and be cold all night long rather than roll over and pick up their blanket that fell to the floor. They all say they KNOW they could pick it up and that shivering is uncomfortable, but they just didn't feel like going to the effort of picking up the blanket. I don't know how you work with that. When someone doesn't like to be uncomfortable but would rather BE uncomfortable rather than exert an ounce of effort, I don't know what to do, especially for bigger issues like not sitting in their own filth. >>>>>

This is Sam to a "T" We had this same issue with potty training and bms. He didn't like going and would hold it and it was a vicious cycle. We did the SCD diet for a year (grain and lactose free) and that seemed to have "fixed" it for us. He still waits until he really has to go and sometimes if I can tell he has to go I tell him to get to the bathroom. Often when he's off and in a bad mood, he goes and is himself again.

He would also shiver all night rather than getting a blanket....thanks for coining that phrase. I'll remember it to "cheer" me up a bit on those rough days!

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iVillage Member
Registered: 09-24-2003
In reply to: judi_d
Fri, 03-07-2008 - 5:59pm

I've been disappointed to say the least in the testing that the urologist has done.

iVillage Member
Registered: 04-07-2003
In reply to: judi_d
Fri, 03-07-2008 - 7:11pm

It's possible that the Miralax is making your dd stool too soft, but from the symptoms you mention (really large BM, loss of appetite, etc), I really think there's more going on with your dd bowels than what you or your doc is aware of. I really think you need to press the issue of getting an abdominal x-ray.

If an x-ray reveals normal bowels, then you know the bladder problems are unrelated to bowels. If an x-ray reveals a blockage, then you know you need to treat the bowels more aggressively. For instance, the loose stool you see when using the Miralax may actually just be loose stool oozing around a constipated blockage that already exists in the bowels. You can outgrow your dosage of Miralax and still get blockages. My dd is now taking 4 doses of Miralax as well as two stimulant laxatives daily.

Without an x-ray, the docs are just making guesses about what's causing your dd trouble. It sounds like they've been guessing long enough and need to get a bit more serious about things. I know it's not always easy 'cus it took us many years and several GI specialists before the docs finally started believing dd had a problem and that it might actually be related to neurological issues (AS) rather than behavioral.

Our GI docs never took an x-ray of dd abdomen until after an x-ray from the urologist revealed that dd was backed up to her eyeballs with stool (I guess that's the one good thing the urologist did for us). The docs just weren't that aggressive in treating the problem 'cus they assumed dd problems were typical withholding issues rather than motility problems even tho' I was telling the docs that dd wasn't withholding. Once dd had the x-ray that revealed a blockage, the docs started doing more regular x-rays to keep an eye on things.

My kids were late potty trainers which I believe was due to sensory issues. After potty training, they had many wetting accidents. I think dd was in 4th grade when she had her last at-school wetting incident, but she still had accidents on the way home from school for awhile after that. They've gotten better with time/age. Both my AS kids and dh still have trouble getting to a toilet on time, tho' 9yo ds is less bad off than the other two. Whenever we travel, dd wears Depends because I can't rely on finding a toilet in time for her when she finally realizes that she has a need. Although it embarrasses her, this is HER preference. Dd also wears Depends at night because she is not night time trained yet 'tho I HAVE thought she finds the Depends a little too convenient (she's happy to sit around in them in the mornings and continue using them rather than go to the bathroom).

We've only seen one urologist for dd wetting, and she was completely useless (worse than useless, actually, 'cus she wrote in dd medical records that I refused to help dd and was making the problems worse, based on the fact that I couldn't compel dd to toilet EXACTLY every two hours round the clock for two months; now when the docs see the medical records, they are prejudiced against my ability to follow instructions and help dd). I hope there are better urologists out there for you and your dd.

I think the preference to sit in one's own waste is part of the whole AS immaturity thing, low sensory awareness (so it doesn't bother them) and lack of concern over socially proper behavior. Like I said before, I've been heartened this past year to see dd actually voluntarily take more showers and sometimes even be embarrassed to wear the same wrinkled/smelly clothes as the day before like she's prone to do. Dh still has hygiene problems, so I don't expect 13yo dd will ever be perfect, but I see signs that she's at least wanting to improve. I hope that will happen for your dd as well.

iVillage Member
Registered: 04-07-2003
In reply to: judi_d
Fri, 03-07-2008 - 7:14pm

It's nice to hear you say that. I love that there are people who've BTDT and can relate! It doesn't change anything, but at least I feel less crazy!

Thanks for the cookies. There's NEVER a bad time for cookies!

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