Encopresis

[YoyoMama]

I have read a number or recent posts here and wonder about my own lackings as so many here have so much more to deal with than I and yet I am at my own limit. Perhaps that is because I have so little reserve and no support.

Anyway, I feel truly embarrassed to write about the issues I have with my son after reading about some of the things others are dealing with - but here goes:

my son has encopresis, which basically is a soiling problem. It seems innocuous on the surface but it creates significant life coping problems in school and socially if not corrected but most tryingly it creates coping struggles for me. After finding mediocre means of treatment (prescribed and suggested by pediatrician. and pediatrician. Gastro) I learned of a University Hospital based program that had a different protocol. Couldn't get into the study, nor learn about their system of treating the children. I did find another program but have not invested the relatively small amount of money as money is very, very tight. (Whole other issue when it comes to MY coping with life.)

The bottom line is that part of the 2nd protocol is to hydrate daily and to use regular enemas. I have been doing this but for the first time since Sept. my son had an accident last night when we were at dinner with another mother and son. OK - one accident in 5 months - that's a new record and no so bad. Well - he just had another accident.

One of the strangest things about it is that he absolutely does not seem to mind. When I ask him about it - he ALWAYS denies that he has had an accident even though the odor is unquestionable.

I am just so amazed that he would rather keep doing whatever he is doing even though he has pooped or wet his pants. At age 8, in the 2nd grade, it is getting to be a real social problem. In December, at his birthday party he wet his pants toward the end and just kept playing as though there were nothing wrong. I was standing with another mother who was saying goodbye and who stood slack jawed over the fact that he was unabashedly ignoring his growing wet spot.

Part of my real frustration is that HE doesn't seem to care and HE absolutely is not invested in solving the problem. Same thing about his lips and his painfully crusted bloody nose (from the dry air from the heater.)

Is there anyway I can enlist his interest in solving these problems? Boy that would sure help enormously. There is something that feels slightly insane about trying to resolve these problems and having ZERO investment on his part. I am baffled.

 

[klmno]

Hi and Welcome! I'm not familiar with this, but others here have had to deal with this in their difficult child's. If you keep your thread up toward the top, you'll probably get a response from someone who can give some advice- or at least support. It is the weekend, so it might be a bit slow around here right now.

 

[DaisyFace]

Hello Yoyomama--

I went through this with my daughter when she was in first grade...so I can understand how frustrated you must feel!

At the time, my daughter knew how to use the toilet...she simply chose not to. AND she used her bodily functions as a way to express her anger--soiling not only herself--but choosing to use other things as the toilet, such as her toy box or her fluffly carpet.

To this day...I have no idea why dshe suddenly decided not to use the toilet any more. It seems unthinkable to me that she would "go" on her own toys--but that's what she did. She also sometimes used decorative boxes as her 'toilet' and then kept them in her toy box....and when I would clean her bedroom I would discover these fancy little boxes filled with disgusting 'souvenirs'. Ugh--so gross!!

When my child started behaving this way...I turned to the pediatrician, whose only solution was to hand me a pamphlet about toilet-training. Talk about frustrating! And rewards/punishment systems definitely had no effect.

Finally, not knowing what else to do...we took away all of her regular underwear and put her back into diapers. While she did not seem to be embarassed at all by the smells, or wetness, or anything else--the diapers (and the fact they they were so obvious under her clothes) embarassed her into doing her "business" in the toilet.

I don't know whether the same solution would work for you--but it might be worth a shot.

At any rate--I just wanted to let you know that you are not alone. Hang in there!

Best,

--DaisyF

 

[Nancy423]

my son was doing the same thing thru 1st grade (still has occasional accidents <sigh>) although he didn't poop that I can recall. Wet the pants, wet the bed....and it didn't bother him either. he'd just continue on. We threatened to put him back in diapers and that seems to have helped quite a bit. Now we'll take away the Wii time if I smell anything. Thru all this tho, he still uses the washroom. We don't give him excess to drink after dinner. Bathroom stop before bed etc. And yes, he'd also deny what he did.....

As for my daughter, since potty training at 3yrs, she's been "accident free" in the underwear if you know what I mean. however, my difficult child did do damage to her room. I'd find souveniers as well. I didn't get the "painting" or "decorating" part, but she also found some sort of container to go in and left it in her room. I swear I steam cleaned her carpet every day.

You just might be stuck putting him in pull-up type of "diaper" or putting his bathroom time on a schedule. My sister did a bedwetting program with- her son a few years back with- success. He'd sleep with- a sensor which would wake him at night so he'd use the washroom. Maybe there's a modified program for daytime use? Problem is, it's probably not covered by ins either...

There could also be a psycological issue as to why.

 

[susiestar]

It is pretty slow on the weekends here, but you are FAR from the first parent here to deal with encopresis. Some parents deal with it until their children are substantially older than yours. So someone will come along with ideas and support.

what little I know about it is that in some children the nerves simply do not develop all the way to the anus so the child truly cannot control it with-o medical intervention.

I also know sometimes it comes about because it hurts to poop, so they hold it, and then it hurts more. I know some docs recommend using benefiber and miralax, but check with the doctor before you do this.

As for your problems not being "big enough" to post about, there are NO problems you can't post about here. Whatever it is, I am willing to bet that someone has dealt with it or has suggestions for it. Or can help you find research about it.

We don't judge you by how severe your problem is, we are just glad to have you join us!

Welcome, if I haven't said that before. And, quite honestly, having little reserves and less support is MORE than enough to qualify you to post your kid problems here.

It really sounds like some connections are not "there" in your child's brain/body. This can be a sign of developmental problems or autistic spectrum disorders, or of something else entirely.

Others will come along soon with ideas and info. Welcome and glad to have you join us!

Susie

 

[MICHL]

Hi YoyoMama, my difficult child (13) still has encopresis and he sounds alot like your son. His diagnosis are Pervasive Developmental Disorder (PDD)/not otherwise specified, ADD, ODD. He is very very ODD and especially now that he's a teen. His pediatrician has me giving him benefiber every day (mixed in with juice or apple sauce, et) as maintenance, and the Miralax for 1 week when he is constipated. It's a chore every day to do this, and he still has the "problem" at this age. When I see his other developmental issues I don't think "age" even has any bearing. I think Susie's post is right on the fact that it could be a sign of an autism spectrum disorder. My difficult child also has problems with other hygiene like properly flossing/brushing, or even just brushing, showering, etc., and doesn't seem to make the connection that it's just one of those things we have to do, it's a requirement that everyone does these things daily. Does your difficult child show an interested in brushing & showering? If so then there is much hope that he will learn to control this problem more quickly that my difficult child. PM me anytime if you want to "chat". Michelle

 

[YoyoMama]

Thanks for sharing Michelle. We used Miralax (prescribed) for over 2 years and this summer I began using glycerin suppositories which worked for a while. The enemas have been a far superior solution until yesterday.

One of the things I have learned in is that the original "functional constipation" expanded the entire intestinal tract so that the nerves no longer trigger the urge to eliminate. So I hope we are going through a minor relapse that is temporary.

Though some of his symptoms are shared by children on the autism spectrum there is no indication that my son has any autistic tendencies.

As to other personal hygene issues, he loves a bath but boy does he hate having to brush his teeth. I suspect there are some real issues about sensory sensitivity.

 

[Marguerite]

I beg to differ on the autism similarities - you would be surprised at what these days falls under the umbrella of autism.

But that isn't as important here - what you describe could have many different causes. It helps to have an idea of WHICH is te most likely cause here, because it makes it easier to know how to treat it. Your son may have other sensory issues, and while encopresis can be due to psychological factors, it can also be a physical issue. In Sensory Integration Disorder (SID), encopresis is often due to a poor body awareness, they just simply don't recognise the body's message that it's time to "go".

With difficult child 3, he also had anxiety in the mix. He wouldn't use a toilet away from home. He needed to know that there were no hand blowers in there (he hated the noise of tem) and he needed to know that there was not going to be anybody else in there (as in public toilets). We eventually were able to get him to use disabled toilets when out in public (as in toilets for the disabled, not poorly functioning toilets).

So difficult child 3 would often soil himself at school, for example, because he hadn't realised he needed to go or because he was too scared to go. Similarly, he would wet himself (but less often). He was bladder trianed long before he was bowel trained (difficult child 1 was the same). I've also known kids who soiled themselves but who wouldn't admit to it because they didn't want people to know (as if noses don't work!).

After some time, the body can add to the dysfunction problem.

With difficult child 1, he couldn't fathom that he HAD to have a long-term solution to a problem. He wouldn't use a potty, but he also wouldn't dirty his nappy. It was as if he thought that if he just didn't go at all, there wouldn't be a problem. After a week he would be frantic, but he still wouldn't sit on a toilet or the potty. And he still had clean nappies. It got so the only person who could help, was his grandfather. So we took to visiting grandfather every weekend, so grandad could literally bully the **** out of him. I hated it, but it was the only way. After he'd done his "job" he felt much better. This went on for several months.

After that as difficult child 1 got older, he ALWAYS needed to be reminded to go to the toilet and not come out until he'd filled it. "Take a book to the reading room" was the instruction. We used our noses to tell us - we would ask, "When did you last***?" and if he couldn't remember, we'd point to the loo. He never could understand how we knew he needed to go - the clue was flatulence. If it smelt like he'd soiled himself, then it meant that things were backing up badly and he needed to move things along. We were still having to do this as he left his teens and headed into his 20s, although we needed to do it less often.

difficult child 3 - we used bribes. We blu-tacked a mini-box of M&Ms to the wall of the toilet and told him they were his, when he used the toilet. As he got more competent, he would earn a box of them after a week of clean pants. Any dirty pants, the clock got re-set.

You can make a kid want to do it, by finding something that will motivate him. Everyone has his price. You start small and do small steps. If he's soiling himself daily and not using the toilet at all, then you give a reward for each time he uses the toilet. Then you ease the reward back to the end of the day being still clean and dry. And so on. Keep the reward small and immediate. Never deduct points; once points or rewards are earned they need to be given. So you can't say, "You earned abox of M&Ms for using the toilet but because you were rude to me, you're not getting them." (I probably don't need to tell you this).

We had problems with difficult child 3 not wanting to clean his teeth - difficult child 1 got him using the electric toothbrush by explaining it was a "tooth tickler". We got one with a timer on it, he had to keep using it until the 2 minute timer switched it off. It's a matter of finding what works. What worked for difficult child 1 when he was 6, was having a dentist explain it all to him. The dentist said to us, "I don't think he took in any of that, he was looking all round the room and not paying attention," but that night was the first in a very long series, where difficult child 1 cleaned his teeth according to the strict proscription set down by the dentist.

We've also had to push the fibre in both boys' diets.

Back to the topic of what a typical person with autism is like - there is no typical person. difficult child 3 is outgoing, loves people, will go up to a total stranger and start a conversation. He has always been like this. difficult child 1 seemed shy, but always had loyal friends. The old ideas of what an autistic person is like - the concept has expanded a great deal. I can look at my husband and see the Asperger's traits in him. We can certainly see them in easy child 2/difficult child 2! She has "Asperger's traits" but the specialist said not enough for a diagnosis. We beg to differ, it's becoming increasingly obvious to us as she gets older.

In our experience - the autism diagnosis has been good news. Someone with autism who is high-functioning, can be a wonderful, capable person. Our kids embrace their autism as a vital part of who they are. difficult child 3, on meeting a very bright 7 yer old (daughter of therapist) asked the therapist, "Is your daughter autistic?"
The therapist was a bit taken aback. "No, of course not. Wht do you think she is?"
"Because she is so very bright, we undertand one another," he told the therapist.

In other words, in his eyes being autistic is a very positive trait indeed!

Marg

 

[DDD]

I had a similar problem with difficult child. He would not relieve himself which ended up causing truly huge compacted stools that could not even be flushed with-o causing plumbing problems. Never did he take ownership of the problem. Bottom line? I insisted on extra fluids and insisted that he take a daily stool softener. These measures solved the problem and I was happy that enemas etc. never were involved. I don't know this to be true but I think that artificially stimulating the bowel "teaches" the bowel not to function normally. That could fall in the category of "old wives tales" but it makes sense to me. Good luck. difficult child has Aspergers so there is a possible connection to the spectrum. DDD

 

[Marguerite]

This is going to sound really gross, but with those particularly difficult stools, sometimes the best thing you can do (for the sake of your plumbing bill) is to either fill a bucket of water and dump it down the loo (it will generally break up and shift almost anything) or to get a small plastic bag (of the sort you take with you when you walk the dog, to collect your dog's "output", put your hand inside the bag, reach in with the bagged hand, collect the offending object then turn the bag inside out over the object and dispose of as you would the bags you bring home from walking the dog.

This method should keep your hands clean and dry. It should also save big plumbing bills.

It also gives you the chance (should your morbid curiosity require such satisfaction) of weighing it, so you can maybe finally convince the doctor that this is a BIG problem!

Marg

 

[Fran]

Welcome to the club.
My difficult child had this problem well into puberty. He was not aware that the sensation meant he should go to the bathroom. He held it until he had no choice. Eventually he has diminished sensation.
He either didn't notice or care what he smelled like, how he felt, enough to stop what he was doing to change.

Motivation of many,many means worked for that immediate time and never long term. He has no interest whatsoever of being socially appropriate.
I do not believe he chose to not have success but he never registered the problem as his problem.
His response was "how I am is good enough".
It's somewhat resolved but I am no longer involved in his bathroom habits other than purchasing a good plunger.

There is a thread in archives about this very topic. It has been very helpful for many parents. I suggest you go there and read.

 

[TerryJ2]

Hi YoYo, funny, I just posted something similar on a new thread. I really answered the question myself but wanted some warm fuzzies.

My son is a lot better these days, but I don't know if it's anything we've done, emotional maturity on his part, or a change in diet. Or all 3.

We got wheat out of his diet. (He cheats, but I never cook with-it and if we go to McDonald's, he gets a burger with-no bun.) I add fibre to his drinks when he isn't looking. He flat out refuses to drink it straight down.

He is in denial. Always.

I like Marg's idea of taping the M&Ms to the wall as an incentive. Never mind your son's chronological age in regard to rewards. Do whatever you have to do. We use candy incentives, too.

I made it a daily routine to check my son's underwear. I had him come up to me and let me smell his butt. If it smelled, I took it one step further and pulled back the waistband and looked. If it was soiled, he had to take it to the laundry, put in in the washer, and then go to the bathroom and wash his butt (not necessarily in that order ).
He hated to have me smell his butt. It got to the point where I could just say, "Well, looks like I'm going to have to do a smell check today," and he'd immediately go wash.

You've got to be persistent. It's got to be a routine. Don't keep changing the rewards or punishments because then he surely won't get it.

We're doing the same thing now with-my son ... he's urinating into the sink. Or something.

You get rid of one problem, and another crops up. Sigh.

Good luck!

 

[emilysmami]

hi Yoyo,

I'm a mother of a 6 year child who is going through the same problem. To be honest I have no idea what to do, I feel the same way you do. I run around after my daughter all the time asking her if she needs to go or if i need to change her. AND her reply to me all the time is NO, i could smell that she had an accident and she will not care.

Today she told me she did not want to go to school beacuse kids made fun of her.. it broke my heart to hear my six year old tell me this. I notified the school about her problem prior to her starting school. i also left extra cloths at the school for her to change. she has a underwear in her backpack with wips for her to clean herself and she's not doing it. i feel lost and do not know what to do. I give her miralax every morning per her doctors instructions to keep her stool soft. sometimes she goes in the restroom, but most of the times i'm washing her underwears. It's frustrating beacuse the smell at time is hard to wash off my hand. I feel embarassed for her and I do not know what to do. please if you find some kind of help please let me know.

 

[AnnieO]

Emilysmami - this is a really old thread, would you be willing to start your own and give us some background?

...AND WELCOME!!!

 

[Marguerite]

Emilysmami, re the smell issues - use white vinegar as the first stage of a rinse/pre-soak. And as Step said - you will get a better quality response from us if you begin your own thread.

Marg