encopresis (again) [okay...still]

Marguerite

Active Member
I'm not sure who said it was about control, but there are several ways of interpreting it. I interpret 'control' in this sense, as simply not being aware (ie not having the control, at the level of brain awareness). That's where it all starts. I don't see this as a matter of a child necessarily deliberately withholding, at least not in the beginning. But it all connects together and I think underlying it all, underpinning it all, is the Sensory Integration Disorder (SID), which in this case leads to a lack of awareness of the need to go. Then you get the secondary problems - I don't feel the need to go, therefore it builds up until it's painful; therefore I will try to hold on for longer next time because it hurts; it gets worse because holding on more makes it worse; lack of body awareness again means the urge to go isn't as well noticed; constipation again with leakage; the smell would kill a brown dog (Aussie expression - our brown dogs are tough) - it all builds up (in every way). The child's sense of shame (it IS there) leads to denial, which increases parental frustration, which leads to the child trying to hide it more because they simply don't know what to do because it's all overwhelming.

You need to break the cycle. If the child isn't recognising cues to 'go', then it's back to early potty training and prompting. We would sit a baby on the potty after meal times - so either in the morning after breakfast, or in the evening after dinner, remind the child to go and at least try. "But I don't NEED to go!" is what you will hear, so it is always best to have set this up ahead of time with the child, via a talk and an agreement. "Just try, take a book with you or a computer game - anything to occupy yourself while you're in there. And have a try."
If no result, simply say, "At least you tried, thank you," and do the same thing next morning or next evening. The daily prompting does set up a BODY response (which is independent of the child's conscious response) and hopefully the body will learn, even while the conscious brain is still struggling with it all.

The cake recipe:
Whole Orange cake  This recipe is gluten free
Note: Imperial (US) measurements are for that measure only. 1 cup castor sugar weighs less than 1 cup of milk)

Boil 2 Oranges (whole with peel on) for 1 hour then Puree.
Blend
        250 gm (4 oz) of Almonds or Almond meal
        1 cup (7 and a quarter oz) of caster sugar
        1 tsp of baking powder
                           
until everything is ground to a fine powder
Add 6  61gm eggs (that's just over 2 oz per egg) to Orange puree  then add almond mix.
Cook at 180 C  (that's a moderate oven, 350 F) for 55 - 60 minutes
Use a spring form tin with foil around the outside in case of leaks.

My own suggestions here - use a silicone baking mould rather than spring-form. Use ground almonds (grind them first if you only have whole blanched almonds). If you haven't got castor sugar, use the usual granulated stuff, but the same weight. Blend the dry ingredients, then tip them out into a basin. Blend the eggs, add the orange puree, then add the almond meal and blend until all sugar is incorporated into the mix. As long as it's all mixed together it should work out fine.

If in doubt over the eggs, weigh out ALL your eggs to a total of 13 oz, then break in the eggs. It works - we have bantam eggs plus full-size eggs, I make my recipes by weighing out the total egg in grams, and take it from there. We've translated a lot of recipes.

It's tasty, it's also high fibre but doesn't taste like it. You can also make a syrup using orange juice and sugar, and pour it over the cake. It IS sticky, but absolutely wonderful. You can serve a piece with cream or ice cream, or a dollop of sour cream or yoghurt. I've known mothers of kids with gluten allergies who serve this up as a birthday cake - the kids love it as a special treat.

Remember - Fibre, Fluids, Frequency.

Good luck!
 

Adrift

Member
I would also be a bit careful with the Miralax. We found that if he wasn't cleaned out (if there was a lot of feces still in there) it sometimes tended to make it worse. I know what you mean about the smell, I can still tell when he's constipated! We also had a bit of luck with this herb and I can find it but we made it into a tea and snuck it into his juice. It worked REALLY well to make him go. I'm sorry I can't find the name but your local health food store might know. Good luck. It does seem to go a puberty at least some of the time.
 

Marguerite

Active Member
Lynn, that herb sounds like senna. There are various preparations available in the pharmacy which use the same thing. Whatever preparation you take, be prepared for it to be rough. ANYTHING which will move things along, natural to chemical, is likely to possibly be a problem. You really need the doctor's OK, even for something herbal. Remember, cyanide is natural too. "Natural" doesn't automatically mean "gentle". Willow bark is natural, it's where we got aspirin from originally. But aspirin is far gentler than willow bark. A lot of drugs are replications and refinements of what is found in nature. Sometimes this means they're better, sometimes it means they're not as good.

Marg
 

Fran

Former desparate mom
been there done that.
I don't think doctors are really aware of how big this issue is with kids on the spectrum.
I never felt difficult child did it on purpose. He just didn't have a sensation that made him think "I need to go to the bathroom". He also suffers from huge BM's although I am uninvolved (since 13 in his bowel habits) I know because the toilets are clogged after his visits.
At 23 it is a non issue but the thinking is if "one doesn't wipe then you don't have to wash your hands." !!!!!!!!!!!! Makes total sense to difficult child when he was younger. He has improved with intellectual
and neurological maturity.

Personal hygiene or even matching clothes aren't high on his priority list.

A) find a physician who understands this is a serious issue. If they don't have answers, they should be supportive or help you find answers.
B) have a pediatrician. gastro check him out. You will be feel better that you aren't ignoring a medical issue.
C) Take a weekend and have his life stop until he takes the Miralax or whatever help you decide to try. Until he takes a shower with soap and shampoo(have husband supervise) He will rant, rave, scream and object but he will be clean for a weekend.
When he comes out lavish praise on how much better it is to share space with him and how nice he looks. It's not going to cure his reticience about personal hygiene. This is a common issue among teens on the spectrum. I tried the "a girl would never kiss that mouth if the teeth aren't brushed". tactic.
My son is better but he isn't going to be on the cover of GQ magazine anytime soon.

It's very distressing to deal with this smelly, ugly problem. It' embarrassing to know that there are those at school who think our children are neglected or that the family lives in conditions that are acceptable to live like difficult child. It's heartbreaking that our child doesn't think enough of himself to take care of his body.

Hugs.
 

Rosienjerzy

New Member
I'm also a mom of 12 year old boy with the same issue. You're definitely not alone:) It's not something that I can chat around the water cooler at work with the girls about since it is a bit of a strange topic. So it's nice to have a forum to share my woes of motherhood.

We have been back & fourth with doctors since my son was a baby. It started out with his abnormally large & painful stools. Pediatrician recommended mineral oil for constipation but that never seemed to help. Took him to GI pediatric specialists, who prescribed Miralax & his stools did get much softer but "accidents" continued to happen.

He was referred to another GI specialist to have motility testing done, which consisted of a full cleanout & a measuring device was inserted into his rectum to measure contractions as both food & medication were introduced. The findings were that he has a very twisty intestine, which may be linked to the cause of the constipation but his ability to feel is normal.

It's been explained to us that the cause is constipation, which collects in his large bowl & causes it to enlarge so his urge to go to the bathroom has been desensitized. Miralax has helped to soften the stool but is also a fight to get him to take it. I also feel that this has evolved into a larger behavioral issue for him because like you said, he chooses to ignore it.

We have now been referred to take him to a behavioralist, which doesn't accept insurance. I just feel that we are running around in circles.
 
Yeah, I don't think my coworkers appreciate updates on my son's bowel issues either. :wink:

My attempt at slipping stool softener and liquid fiber into his breakfast shake failed miserably. He took one sip and went UH-UH that's that nasty medicine! (Miralax) Outright refused to drink it. No encouragement would help.

So we had a little talk about what a pediatric gastroenterologist is. How it would be in HIS best interest to take the **** stool softener because they will x-ray him and if he has not "cleaned out" they will do it. His eyes got a little big there. How? Hmmm. What to say to keep his interest without making him outright refuse to go to the hospital ... well, you know how this works slowly? What they give you will work FAST. Whoosh. I think he got the point.

I got him to take 2 tsp of the liquid fiber that is *supposed* to be unflavored, clear and odorless. He sniffed it and gagged. I insisted, and he downed it and gagged some more, screamed and whined about how horrible it was, grabbed a mint and left for school still mad at me. He won't take that again without a fight, or me hiding it awfully well. Like in a can of Coke maybe. *sigh*

At least this morning, he didn't argue about or try to deny his leakage problem. But he was awful concerned that stool softener would make it worse rather than better. I think he needs a visual, a diagram or something, to understand.

What do you hide Miralax in for those hypersensitive to taste?
 

Josie

Active Member
I read on my celiac board that some people have this problem before they give up milk and/or gluten. Both of these can cause constipation even without full-blown celiac disease.
 

wakeupcall

Well-Known Member
Try giving him the Miralax in iced tea. I put it in and stirred it all up until you couldn't see even ONE flake of the powder, then added ice and he never knew the difference. Of course, do this out of site of your child.

Now isn't it a shame we have to get on a site and talk about poop??????
 

Marguerite

Active Member
Seriously, I think you're fighting an uphill battle when you feel you have to smuggle the medicine into him somehow. Besides, he's 12 - you should be able to explain things in full and ask HIM to come up with a way to get the medicine into him.

One of my sisters had a young child who refused to take his medicine. I think a lot of my attitudes about dosing my kids came from watching my mother and sister make A LOT of mistakes. Don't get me wrong, my mother was a genius when it came to child rearing, but this boy had her beat.

Background - my sister, at the time, owned a pub. A typical Aussie country pub, out bush. "On the outer Barcoo, where churches are few and men of religion are scanty, on a road seldom crossed save by men who are lost, One Michael McGee had a shanty." (Banjo Patterson, "The Bush Christening")
THAT sort of pub.

The place was rough. My sister spent a lot of respite time back with us in Sydney, especially when she had her second child. By this stage hr boy was 3 and a real handful. With hindsight, it's possible he was refusing medicine because a long-term guest at the pub was drugging him and molesting him (my sister still is brilliant at denial). Whatever the reason - this was a kid with chronic tonsillitis, middle ear infection and asthma. He had to have medicine and he was very clever at refusing it. My mother would put his medicine in milk shakes, in strongly flavoured cordial, in whatever she could. Frankly I think she would have been better off getting his antibiotics in capsule form and either teaching him to swallow capsules (I know, but even at 3 it can be done) or opening up the capsules and sprinkling the contents onto a peanut butter sandwich.

What I learned -
* Liquids taste funny and are coloured. They are hard to hide.
* The more you dilute a liquid (to try to hide the taste) the more volume you have to get down the kid's neck. Somehow.
* The more you try to hide a kid's medicine, the less the kid will trust you. And with my nephew, it turned out that trust was later on a big issue.

What I did when it was my turn - I used syringes. Our place must have looked like a junkie's paradise. We had (still have) syringes everywhere. Someone's on rough-smelling, syrupy cough mixture? You know the stuff where half of it stays glued to the side of the medicine glass, so you add water, swill it around and have to drink that too? I HATED that as a kid. But a syringe - you squirt it down so fast, it hits the back of the throat and is swallowed so fast that most of it bypasses the taste buds. Plus, it gets squeezed out of the syringe so there isn't enough residue to worry about. It's also a lot easier to fill a syringe accurately, than to try to fill a medicine glass. No needle, of course - just the plastic syringe. The tip of the syringe is blunt and plastic, also very short. You can't do any harm with it.

Because we used syringes, the kids always knew up front that it was medicine they were getting. Total honesty. If it was nasty-tasting medicine it was a pity, but the kids knew our method was the one that helped THEM the most. And just as it is easier to worm a dog or cat with a syringe, or to drench a sheep or cow with a drench gun, the most difficult kid can be held down and 'drenched' with a syringe. But keep the volume small, so the task is over and done with, then if needed you shove in a sugar dose (a shot of cordial extract or a toffee) as a reward for taking the medicine.

A lot of fibre supplements are gluggy anf gelatinous, very hard for some kids to cope with. Psyllium, for example (as in Metamucil) is something I just can't take. husband takes the unflavoured form in milk, he says it's like a milkshake. He can keep it. You can also take psyllium in capsule form. I tried that - no problem with the texture - but my body objected. Psyllium is something my body is sensitive to, so it is off my list.
Muesli is good, if you avoid the high fat, high sugar toasted mueslis. difficult child 3 was put onto muesli earlier this year, after HIS latest constipation/bowel problem scare. He was told by the doctor to eat more fibre and drink more water, eating muesli was his fibre compromise.

A kid with toiletting problems - even though difficult child 3's language skills were still not great, we found a way to talk to him about what was needed. We went to an expert on bladder training (we handled the bowel problems ourselves) and SHE talked to him also. We dumbed down basic anatomy and physiology to a level the child could handle. Your son should be able to understand this.

You've given him a scare about what will happen if this gets to the need for medical intervention. OK, fair enough. You've made a start. But if you can follow through with a detailed diagram and description of WHY this needs to be fixed - by him and you and any health professionals, all working as a team.

Here's my explanation for thirteen year olds:


Keeping it simple - food goes in. It has to - our bodies need fuel. We need GOOD fuel, our bodies are still adapted to hunter-gatherer diet of large hunks of meat occasionally, with regular amounts of whatever berries, roots, fruit and plants are in season. This provides a variety of fresh food which contain carbohydrates, micro-nutrients, vitamins and FIBRE. And with our modern diets we often miss out on some of these vital foods, which makes the problem worse.
We also miss out on water. We need water. It quenches thirst, it soaks into every cell in our bodies, it keeps everything working well.
And we need to excrete. Because we are adapted for a variety of foods, and those foods are adapted to feed a variety of other organisms as well as adapted to propagate those foods themselves, there IS going to be waste. It can't be avoided. In a traditional hunter-gatherer diet, most of that waste would be undigested (or indigestible) fibre. Our bodies are designed to not only excrete this, but to use it to help excrete other waste products which are less easy to shift.

Food goes into the mouth and is chewed. Our saliva is the first liquid mixed with the food (which itself contains moisture). In the stomach, gastric juices are secreted (including dilute hydrochloric acid). All these processes require you to be well hydrated.
As soon as we swallow, peristalsis begins. This is wave after wave of rhythmic contraction, like wringing out a cloth by running your finger and thumb in a ring around it and pulling down. This peristalsis should continue all the way through, from beginning to end. But it needs enough material to be there, and to be squishy enough, to work properly.
The stomach also pumps in bile to help emulsify the food, to make the particle size really tiny. This helps the food to get absorbed easily. Bile tastes awful but at this level you have no taste buds. You only taste it if you throw up. Not nice. Best to keep it where it is doing good.
Bile is made from old, broken down blood cells - a job the liver does. This means that bile salts are a waste product too, but a waste product that the body uses in the stomach to good effect -genius, eh? But that is also why what we excrete in terms of solid waste, is brown.

Back to the stomach and small intestine. Here, food broken down thoroughly is getting absorbed. It is now almost at the molecular level. Once in the bloodstream it goes to the liver (which cleans it up) and then to every cell in the body, to supply each cell with energy and nutrients. The blood also picks up waste products for disposal. Waste products at THIS level are mostly dealt with by the lungs and kidneys (ie that's how they get out of the body).
Back to the intestine - not everything got absorbed. And a good thing, too. If just about everything got absorbed except a tiny smear, it would take a long time for successive meals to build up enough waste, for the body to be able to move it along and get rid of it. In the extra time it would take, that waste sits there and putrefies, like a compost heap managed badly. Vermin proliferate (bacteria and parasites, in this case). Some breakdown products also find their way into the blood stream, which makes the liver have to work harder. And if bad stuff gets into the bloodstream faster than the liver can cope, it affects you. Like alcohol - drink it too fast and the liver can't catch it all, and you get drunk. But if you try to drink slow enough for the liver, the ice melts and the drink warms up.

Now we have a small intestine merging into the large - all that gets absorbed here is water (hopefully). We don't want waste products absorbed here, but again, too much transit time (like an overcrowded train system at peak hour) and everything backs up.

Crowded trains are still rigid, they can't stretch. But your intestine can. It's not good for it to have to do it, but it can. An intestine that is slow because there isn't enough material in it, not enough fibre, will not only stretch, but with putrefying contents it can make you feel unwell. It also makes the intestine not work so well. It all makes it worse.
Slow transit also means the contents dry out. This makes it hurt more, and slows it down more. If you make an effort to drink more water, this makes a HUGE difference. But if the problem is really bad, you may need some extra medical help to begin to turn the problem around and fix it.

The large intestine is called "large" for a good reason. At this point, it is designed to hold the contents, churn them around like a gardener forking over his compost heap to keep it healthy and sweet, and to move things along to the exit sign.

The exit - the descending colon and rectum. If the rectum is filling up, you SHOULD feel it and know to go to the toilet and "spend a penny", as my mother used to call it. Take the Gameboy or a good book and be prepared to give your body plenty of time.
Not everybody feels the rectum filling up. AND it can stretch, unhealthily. Hey, if you delay, it HAS to stretch, you've given it no choice. So if you have a body that isn't good at telling you when to go, you should make a point of going anyway, at least once a day at the same time. Eventually your body will get the hint. And in the meantime, you will read more chapters of your book or advance a few more levels on your Gameboy.

What happens if things don't work properly?
If things move too slowly, your body absorbs toxins (poisons) made as the waste decays inside your body. If it moves too slowly, it dries out and getting rid of it can feel like trying to pass barbed wire. Your anus can actually get small tears in it which hurt, and mean that NEXT time hurts too.
If things get stretched inside, especially for too much of the length, you can get a condition called diverticulitis. It means small pockets form, like little blowouts of a car tyre. And if they get inflamed or infected (which happens when bits of waste break off and get trapped in these bubbles) then it can be like appendicitis, multiplied. If it's really bad, you make have to have an operation to remove part of your insides to stop the pain. But they won't do this until they've done other, invasive tests (the least of which is a doctor pushing things up the back way to have a look-see at what is going on). Doctors don't do this for fun - I doubt they like it either, but sometimes it has to be done.
Long-term, a slow transit time and absorption of toxins can cause a lot of other health problems.
Another BIG problem when solids in the intestine get TOO solid - peristalsis
doesn't move it fast enough, other liquids get squeezed past the obstacle and you get leakage. Not nice - it feels awful, because it's squeezed past a big lump of decaying matter it smells awful, and next to your skin it burns and makes your rear end painfully sore. By this stage, you're probably not feeling as well as you should be. And you're probably also feeling depressed - not just for being in this state, but because the toxins leaking back into your bloodstream are affecting your body badly.

But it can be fixed. And it's not that difficult. It means you have to work at getting well, but the rewards are great. When everything is working well you will almost certainly be going to the toilet more often, but that's OK, that's what it's for. We all do it.
Getting the waste out of your body at the right speed makes you feel energetic, alert, smarter, happier and LIGHTER. It also helps you enjoy y our food more because it will taste better.

How do you do it? Three words -
1) Fibre. Make sure there is plenty in your diet - it doesn't have to taste like cardboard, either. There are some really delicious foods which contain fibre in soluble form, you're hardly aware of it. It's an easy research project, or you can see a dietician and ask for help for your particular problem.

2) Fluids. Keep the water up. You could take all the fibre in the world, but without the fluids you need, you will still be constipated. Your body invests a lot of fluid in your body functions, including your digestion. The least you could do is give some back to it.

3) Frequency. Take yourself to the "reading room" at least once a day at the same time, and have a good try. Don't force too hard or you can get other problems (which are also related to letting your bowel stretch too much and for too long). Your body will get the message soon.

Sometimes while trying to get fixed up, you will need to take some medicine. If you need to, find out more about how that medicine works, and give it a helping hand by watching your three Fs. And if you can find natural sources of food and drink which will help, then great! Not everything that can go wrong with you can have such a tasty treatment plan.

But whatever you do from here - you need to keep up with it. However, once you begin to feel better, keeping up with treatment is easy. And nobody needs to even notice!


Anyway, that's the sort of thing I mean. If you can explain things to him like this, you are doing your darndest to enlist him in trying to help himself. ANd if YOU can't explain it to him, take him to that gastroenterologist and get HIM to explain!

And I didn't get to mention the bladder, and how it fits in. I will if you want me to, but this should be way enough.

Marg
 

Estherfromjerusalem

Well-Known Member
Wow, Marguerite,

That was very learned, and very very interesting. Thank you so much.

Encopresis is still a topic that fascinates me, even though I no longer have to deal with it.

Today, my difficult child is actually fastidious about cleanliness. He showers at least once a day, changes his clothes all the time giving me loads of laundry, and uses deodorants etc.

But he doesn't have a BM every day -- more like twice or three times a week.

It is still a very delicate and tense subject in our household.

Love, Esther
 

Marguerite

Active Member
Some people are set on a slower clock and for them, every few days is their natural schedule. In contrast, I have a book by an Aussie naturopath who says we should be having a BM after every meal. I think that's a bit over-the-top. Her argument - we take food in each meal, we should be moving things along just as frequently. And maybe for her, that is how it is, but most people pass a lot less in mass and volume than they take in.

Eventually, we should find our own level and what works for us as individuals.

For us, we use knowledge and information to explain WHY something is important. This means the child no longer sees US as the enemy, but whatever he is dealing with. difficult child 3 doesn't want to feel sick and have a sore tummy again, the doctor explained that he needs a lot more soluble fibre in his diet, he doesn't like psyllium (and you have to take a handful of capsules to get much benefit) so difficult child 3 himself chose the muesli option. Besides, Daddy eats muesli and difficult child 3 likes doing what Daddy does.

I still have one of my medical textbooks which I use to confirm or check information, although it's getting sadly out of date. My course was identical to 2nd year medicine, plus I worked in the teaching section of the medical school. It tends to rub off a lot. I then went on to study comparative physiology, parasitology and zoology, which is why I get so enthusiastic about most wildlife (except spiders and Bogong moths). I've been really glad of the chance to use my experience to teach my kids about themselves and their environment.

Marg
 

TMB2S

New Member
I am new to this, just signed up today. Not sure of all the abbreviations so let me try. My child is now 14 have had encopresis for 8 years. We have been to too many Dr to count. There has been so many guesses I can’t list.

Was told he was ADHD & on concerta and helping ADHD only. We were told that he would grow out of it. He was put on stool softeners & enemas to "clean" him out.

He will deign that it is there, state that all you are doing is trying to embarrass him, or my personal favorite that I planted the BM in his pants to justify yelling. He hides the soiled pants, leaves them on the floor, piles them up, hides them in other people’s clothes, or just wears them. It is everyone else’s fault. He is innocent. We were told that when he was interested in girls it would stop. He has "girlfriends" that understand him and as one put it her mother works in a nursing home so she is use to it. He is in high school and today at Dr. appointment. told me that I only have to put up with it for 3 more years. Our house smells worse than an outhouse. I am constantly finding more. He will even hide food in his bathroom with soiled underwear in a bag next to it. He stained the toilet due to him actually going in it and not flushing. Had to scrub and soaked it with bleach while gone for a week. When the little “balls” roll out of his pants he just grinds them into the floor. He swears that no one knows but us yet his friends are asking why he smells, they are just kidding is his comment.
He also wets his bed at night. The urologist stated that due to him holding it for so long the only time that his muscles relax is when he is asleep. He will wear his underwear for them to dry. He leaves his sheets to dry and will sleep on them again unless you catch it. We got a bell and pad to alarm when he wets. He unplugs it or moves it under his pillows so it won't wake him up.

He doesn't like friends to come over because the youngest might rat on him. He says that he is embarrassed but does nothing. He claims that he doesn't know when he does it, yet can tell you when and where he did. He told the DR he couldn't feel anything. Was tested by a neurologist and all muscles are normal. Even admitted he can feel it. Every DR states that there is nothing physically wrong with him. It is either an attention or controlling issue.

We have tried to ignore it and the smell gets so bad that it can knock you out. If we are not careful and run bleach in-between his clothes in the washer others get sick.

For years the DR have told him to retrain his muscles every time he promises to he doesn't try. He will lie about pretty much everything and then get mad when he isn't believed.
He will stand there with full pants ,where there is no doubt, and tell you he is clean and even when he sees it he will dismiss it.

We have tried to reward him, he will do better to get the reward and then go back to doing it. When in depends due to goodnights don’t fit anymore he not only soils but wets on himself because as he puts it why does it matter. We buy, one time use underwear, he will not throw them away. Have even went without and it rolls on the floor.

I have realized that he will not stop unless he wants to yet have no clue as to when or what will cause that. We are at the end of our rope and have talked about school or special programs. Looked into military school but he will be expelled and forfeit tuition if he does it there. Residential programs are around $3500/mo pulse therapy, and an institution won’t help it would just hinder. Nothing is helping or working.
 

Steely

Active Member
Hi tmb2s, and welcome!

We love responding to our board members and their posts, but the best way to get everyone's attention is to start a new post. I would suggest taking exactly what you wrote, copy it, go back into "general" forum, and "start a new topic". That way all can see it!

So sorry you are having such difficulty with your son. I know others will come by soon with more advice You have found a great board.
 
Well, I just saw TMB2S' post today on the main board, and went to find this to bump it up to help, but I see I'm a day late and a dollar short as usual. LOL


My son has an appointment with a pediatric gastroenterologist for a few weeks from now. I keep warning him to stop avoiding the fiber (make better food choices, take the supplement, etc.) and get himself cleaned out or the doctor will!!
 

LynnG61

New Member
Good luck, I am dealing with this in my son, and it recently started this last May at the age of 14. (i am with The Lone Ranger on this one)This has never been an issue for him in the past, and naturally my mind flew in several directions at once. The "white elephant" you speak of has reared it's head here in my home with a vengence. We went from never having this to it being an ongoing, daily incident. Rarely at school (twice now) twice at a 28 day DOS program (incidentally, each time it was after a huge "blow up" with staff) and at home, and again each time he was displeased with me usually when asking him to do something ie: clean up bedroom, chores, etc. He would place his stool on the shelf in his closet, or in a drawer, hide his underwear under his bed, etc.

Professionals have ruled out sexual abuse, medical testing has ruled out him not having encopresis, and that left us with "control issues" to deal with.

The only thing left we can think of is that my difficult child does this when he feels he has no control over situations that affect him. (case in point, when I had to call police over his assaulting me, he said to the PO "she was telling me what to do like she was the big man in charge and all that!'

Like many parents here, I face the challenge of hygiene with him as well, and showers, brushing his teeth, keeping himself clean to include clean clothing is an ongoing battle.

Due to phsyical aggression against me, son was recently placed in an Residential Treatment Facility (RTF). To my knowledge, based on the Therapist and the staff, this has yet to surface there (honeymoon period).

To combat hygiene though (it encompassed more than just hygiene but that was listed in the chart as well), I kept a chart on the refrigerator of chores and items he was responsible for on a daily basis. Things that he truly enjoyed doing (internet, playstation, etc) I limited his favorites to earned evening activities. After the daily list of was completed, checked off, discussed with me, then he earned the time to participate in his favorite activites. Granted a few nights he only had 15 minutes to do them due to his procrastination, some nights he earned no time at all, but for the most part, he realized that in order to do the "fun things" he truly enjoyed, he had to get things completed no later than one hour before bed time.

Not saying this would/could work for others who face this as "control issues" but the chart showed him his daily progress and he realized he controlled whether or not he was able to have the time to do things. It minimized the need for me to remind him daily, and minimized many outbursts. Now to work on the rest of his anger control issues with mom.

I use benefiber in his morning juice or whatever else he may be drinking (loves his hot chocolate) it dissolves and has no taste.
 

Anna1345

New Member
Not sure if you are still looking for advice, but I found this and it seems really informative and thorough:

The treatments for encopresis must include treatment for the underlying constipation. This may include a 'clean out' regimen of enemas, suppositories or high dose mineral oil to remove the backed up or impacted stool.

Other treatments are aimed at improving your child's diet. A diet low in fiber or fluids can contribute to constipation. So can drinking too much milk. Some steps to improve your child's diet include:

* Increasing fluids: Increase the amount of water and fruit juices (minimum of 2-3 glasses) that your child drinks each day.
* Increasing fiber: Increase the amounts of fruits and vegetables that your child eats. Raw, unpeeled fruits and vegetables (especially beans, sweet potatoes, peas, turnip greens, raw tomatoes and corn) have the most fiber. Popcorn also has lots of fiber in it. Give enough grams of fiber to equal their age in years plus 5 each day (check the nutritional label for high fiber foods and snacks with at least 3-4g of fiber per serving). Vegetable soups are especially high in fiber and also add more fluid to your child's diet.
* Increasing bran in your child's diet by offering bran cereals, bran muffins, shredded wheat, graham crackers, or whole wheat bread.
* Decreasing constipating foods: These include milk, yogurt, cheese, cooked carrots, and bananas. Drinking too much milk (your child may only be drinking 2-3 cups a day, but it may be too much for his system to handle) is heavily associated with being constipated. Switching to soy milk has been shown to soften stools. If your child is unable to drink milk, then offer a daily multivitamin or other sources of calcium.

Until your child's constipation has improved with a non-constipating diet, your child will most likely also be on stool softeners. Most of these medicines are available in the pharmacy over the counter and do not require a prescription. They include Metamucil, Milk of magnesia, Citrucel, or mineral oil. Unlike laxatives in adults, they are generally not considered to be habit forming. You should use them once or twice a day and work up on the dose until your child is having a soft BM each day. If you child starts to have diarrhea, then you are giving too much and you should cut back on the dose. See the table in our Guide to Constipation for dosing information.

Another important treatment of encopresis and constipation is behavior management so that your child learns to have a bowel movement each day. You should encourage your child to have regular bowel patterns. Have your child sit on the toilet for about five to ten minutes after meals 2-3 times each day. The use of simple rewards or a daily calendar with stars or stickers for days that your child takes his medicine and has a bowel movement may be helpful. Your child doesn't necessarily need to have a bowel movement each of these times, and you shouldn't punish him if he doesn't. It is more important that he gets in a regular habit of trying to have a bowel movement.

And remember that the leakage of stool is involuntary. Your child is not doing it on purpose and he shouldn't be punished or shamed when it does happen. The distention and stretching of his rectum from the impacted stool can take a lot of time to get back to normal, and until it does, he may not be able to sense or voluntarily hold in all of his bowel movements, and so leakage may continue even with proper treatment.</div></div>

See full article here
 

wakeupcall

Well-Known Member
Thanks, Anna, for the article. This seems to be an ongoing problem for some of our difficult children. My son is twelve and is still suffering. It gets a little better, then gets bad again. I still hope that he'll outgrow it....soon.
 

lakewriter51340

New Member
We are having continual issues dealing with the school. DS is 15, grade 10, Aspie, takes regular classes each a.m. for English, Biology and Algebra and according to the regular teachers is doing well. In the p.m. he goes to Special Education for study skills, social skills, job skills, etc.

He says he doesn't have much in common with "those kids" in the Special Education room -- and he is a pretty smart kid. But I've told him until his focus and behavior are as good as a typical student in his grade, he needs the support of the "other room."

I'm not that thrilled all the time with the Special Education teacher. She periodically sends me emails that things are not going well, and she's particularly freaked out about the encopresis.

DS sometimes has gone long periods -- maybe down to once in a semester that he has to clean up and change at school -- but now he's allegedly up to four accidents in the last eight school days. She asked what was causing this and I gave her the primer on enco (my own succinct explanation) that I've given her several times already. If she means what's causing this right now? I don't know. I'm not in his colon.

We send clothes for changing, I've told her he can throw away the underwear, and he has been cleaning himself up just fine for years. Now they're saying they're "very uncomfortable" about the amount of time he spends in the shower. I've given them hints to set a kitchen timer or something so he doesn't get lost in thought -- or whatever -- while he's in there. They don't do it then the ***** at me for the time my son takes cleaning himself up.

What concerns me now is that the Special Education teacher seems to be trying to gather a consensus of the Special Education team, the counselor, etc. to confront us at a "meeting" she wants to set up with us. She's mentioned Dylon switching from underwear to Depends "to avoid embarrassment for him." I don't understand the need for this since I've said they can throw away the underwear for any soiling that happens at school.

Obviously I have many issues right now with the high school and they seem to want me to solve DS's problems -- something I'd be thrilled to do if I could cure autism or encopresis -- and if I had that ability I'd do it for all of your kids too.

Anyway, is it a reasonable request for them to press us to use diapers on DS at school? I feel it would be a step backward as far as dealing with the encopresis.

On the other hand, I am getting very concerned about the effects of it (always have been.) There's a program at University of Iowa called REACH which sounds like it would be perfect for DS after high school -- students with disabilities live on campus in the residence halls and experience university life to the extent they are able -- mostly taking vocational skills classes in the program but they may take any university course available which they have the ability to do. DS is actually a very talented digital artist and would be great for the program except...the students in the program have roommates and I don't know if that would work out at all.

I realize he won't be in a college situation until almost 3 years from now and anything (please Lord!) could happen, but it's definitely to the point where his enco is limiting him and it will get worse as he becomes a young adult.

Anyway...what do you think? Do we "give up" and go with the diapers if it makes it easier? I don't get how they'd be easier since as I said he cleans himself and they may throw out underwear at school if they want to.

Thanks for any advice. I hope I can provide encouragement to you all.
 

mstang67chic

Going Green
Absolutely no help here with the actual encopresis but for the Miralax? I do have advice. **as I sit here trying not to gag at the thought**

I had to have a procedure that required mixing a Godawful amount of that horrid devil powder (not that I am traumatized or anything) in Gatorade. I don't know how it mixes in other liquids but in something like the Gatorade, while there was no taste, it DID thicken it up a bit. The idea of a shake is a good one for the sh....ermm....stuff. It shouldn't be noticable in something thick like that. I would suggest though that if you use something like milk in the shake, mix the devil powder in that first. When I mixed it in the Gatorade, I mixed it well and for quite a bit and it was still a bit grainy.

You might want to start with a fraction of the recommended dose for his age/size to see what it does and then only increase every other day or so.

Sending hugs out to you and anyone else dealing with this. The worst bathroom type thing I've had to deal with was difficult child peeing all over the toilet when he was younger so I can't even imagine dealing with this.
 

gcvmom

Here we go again!
I don't see how Depends or underwear is going to solve anything. It would be one thing if he had urinary problems -- Depends would help. But the odor from the fecal issues is inescapable.

Did you ever try Miralax in Gatorade? We used that for difficult child 1's colonoscopy prep in April and it was awesome. He gulped it right down, no problem! Even easy child/difficult child 3 had taken it without issue (mixed in juice) for constipation issues.

Is it purely a dietary or functional bowel issue or has anyone identified an emotional/behavioral source?
 
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