encopresis (again) [okay...still]

Discussion in 'General Parenting' started by myfirstandlast, Oct 16, 2007.


  1. I can't tell you what a big "elephant in the living room" this problem is.

    He's 12. He really, really stinks.

    He's in total denial. I think that's how he copes.

    Completely unwilling to address the problem in therapy, with his pediatrician, even when confronted with his own soiled underpants ... he has put together a really good "how did THAT get there" act over the years.

    I barely have the strength to convince him to clean up when he smells, he resists so much, and it causes so many problems with other family members.

    I'm hoping someone can tell me what I might be able to give him, over the counter would be most helpful, to get him cleaned out and regular. He is an extremely picky eater and I'd have to hide it well. I thought maybe I could slip some stool softener and fiber into a milkshake every morning or something. He skips breakfast because he is always racing for the bus, nearly missing it almost every morning.

    I've got so many other huge stressors going on right now, I don't have the energy to fight him over this anymore. I just want it to go away.
    :9-07tears:
     
  2. gcvmom

    gcvmom Here we go again!

    I understand that Miralax, which is now available OTC, is a powder with no taste or color that you can mix into the beverage of your choice. My son's GI was going to use it for his prep when he was scheduled for surgery this summer (it got cancelled) and she said kids don't even taste, see or smell it. The smoothie/milkshake idea is also a good one, especially if that's something your son already likes. We've got bowel and food issues in our house, too, so I can appreciate what a pain it is.

    Good luck!
     
  3. totoro

    totoro Mom? What's a GFG?

    We have not had to thankfully deal with this, I just wanted to let you know I was thinking of you and can not imagine the stress this puts on you... I know I have seen this posted about in the past... so I am sure some will chime in!!!
     
  4. smallworld

    smallworld Moderator

    We've used Miralax here (per our pediatrician's recommendation), and it's worked very well. As gvcmom mentioned, it just recently began to be sold OTC.

    Has your difficult child ever been evaluated by a pediatric gastroenterologist? Physical issues should be ruled out.

    If he has High-Functioning Autism (HFA) tendencies, he may not be in denial. He really may be clueless about when he needs to go and the feel/smell when he has an accident. This issue may very well be part and parcel of his disorder.
     
  5. susiestar

    susiestar Roll With It

    Whether he wants to face this or not, you need to talk to his pediatrician and to a pediatric gastroenterologist. This may very well be either a physical issue or a developmental issue. He may truly not know when he has to go or is going. It is not terribly uncommon in people on the autistic spectrum. Can he wear goodnights or depends? A small pack of wipes in his backpack at school to helpthere?

    One physical cause is that the nerves may not have developed all the way. I have a friend with a son with this problem. He will not eat except right after school because he wants to not have accidents at school. This has created problems with constipation and other things. It really is necessary to get a doctor to check everything out.

    Hugs to you, this is very difficult for parents.

    Susie
     
  6. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Very dear Myfirstandlast,

    I can't begin to describe how much I feel for you. I coped with encopresis in my son from age four and a half until just over thirteen, and believe me when I say that I know where you are at. I got absolutely no help at all from my pediatrician, and we coped with it alone. Alone. Until the glorious day, when he was about 10 or so, when I discovered a support group on the internet for parents of children with encopresis. We weren't hooked up to the internet at home then, but my place of work hooked up and when I discovered it, I just surfed and surfed, and printed out stuff, and sat in front of the computer for two days, crying, while my work-mates tiptoed around me.

    Look, I could write you a book here, but I think the post will be too long. I'll just tell you this: For your own peace of mind, I must tell you straight out: IT IS NOBODY'S FAULT. Not the parents. Not the child. It is caused initially by constipation (what causes the constipation is another matter entirely, and of course the child should initially be checked by a pediatric gastro doctor to rule out any other problems). It is very very rare indeed that encopresis is caused by sexual abuse or used by the child as a control mechanism. Because of the constipation, there is pressure on the nerves at the bottom of the colon and at the anus, and these nerves become damaged and the child truly doesn't feel when he goes. Also, liquid stools that have not yet hardened leak out around the backed-up stuff and come out, and the child doesn't feel it. He also develops, as a sort of defense mechanism, a feeling of not smelling it when he goes.

    Don't let the psychiatrists drive you mad. I have walked that path, too. The only thing I can tell you in that direction is that you must not get angry with him or get into arguments with him about it. He can't help it. It is not his fault. You have to love him, accept him, and hug him, and assure him that you love him and always will. And that goes for your husband too. Punishments do not help at all. They just make it worse.

    If you want me to carry on, about how I coped with it etc., and if this subject is OK with the Board here, I will. Ask me specific questions. You can PM me too, although I think talking about this out loud will help other parents who are coping with the problem.

    I truly do have a lot of input on this subject. But for now, I'll end on an optimistic note: Usually it just sort of disappears at puberty. I don't know why, but that's what happened with ALL the parents on the support group I belonged to. I don't think it's active any more. It was called encopresisinfoexchange, and it was done vie e-mail. Look for it in Google. And please feel free to ask me anything you want.

    Sending you as much support as it is possible to send over the cyber waves, and a big hug.

    Love, Esther
     
  7. Okay, I called his pediatrician and left a message for a referral to a gastroenterologist.

    He has had these accidents in school, on and off, since 2nd grade.

    I say on and off, not because it ever really went away, but because it definitely gets better at times and much worse at times, with this time since his father died being one of the worst I can recall.

    Had a pretty bad interaction with his pediatrician the last time I made an appointment to sit down with her (without him) and talk about the encopresis and bedwetting issues ... she felt that it was psychological at this late age and that I really had to consider the possibility of sexual abuse. It felt like an accusatory statement, and I haven't wanted to bring it up since. He was in counseling at the time, but it is a subject he refuses to talk about. (Encopresis, not abuse.)

    ~

    He's doing okay in school right now. I'm tracking his progress online daily and he knows he can't get away with anything because I'm in email contact with his teachers.

    We have an IEP meeting next week. He was doing pretty poorly in school the first month, but seems to have straightened things out pretty well since he knows I can bust him if he tells a fib about homework. I need to let them know, since this is a new school, about him being able to use the restroom whenever he needs to rather than requiring a pass or whatever ... the time that takes, or the stigma of getting up in front of the class and waiting for a pass, used to always make ME hold it in school. Hated that.

    He does pretty good about taking his wet bedding downstairs and even washes it when asked, but soiled underwear just vanishes. I finally wised up to buying him dark colored briefs instead of the whites.
     
  8. susiestar

    susiestar Roll With It

    I just realized your ex is deceased. I am so sorry. I feel your doctor is out of line. I might suggest a new pediatrician? A doctor who would treat me that way would not be my doctor anymore. Not unless she wised up.

    I hope that things becoem less painful for your family soon.

    Sending hugs,

    Susie
     
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Good heavens, I'd get a new pediatrician. If he's on the autism spectrum it's not that unusual for older kids not to know or care when they have to go and if they smell. My son doesn't wet or soil his clothes, but I have to bug him to make him take a shower. He doesn't care one bit if he stinks. The kids are not peer-oriented so they don't much care if they don't fit in. I'd check out that online support group that was posted. You'll get hints from experts (mothers!!!). I think often mothers know best.
     
  10. lynnp

    lynnp New Member

    Hi, I'll second the recommendation for the pediatric gastroenterologist. That's the ONLY person who really understood what was going on. We've just finished (I HOPE) with 10 years of encopresis. My son is 12. What worked best for us is pretty much what Esther said above. NO blaming, shaming, punishing, lots of love and support. Trying more fiber than not. We used Miralax daily for years but what I think worked best was ducolax. We'd give one in the morning and one at night through the weekend then one a day each day. They are so tiny they are easy to swallow. Heck, does he like money? Pay him a quarter a piece, WHATEVER it takes to get him to take the medications works because once he stops soiling even a little the positive reinforcement takes over and he'll be more motivated. THis is AWFUL!! and no one really understands unless you've been there done that. Please feel free to PM (BM? :)) me if you'd like. Good, good luck!!!!!
    Oh, and we also carried wipes everywhere and promised him that it would be fine with us if he were away from home and he needed to just throw away the underwear. We also were willing to help him hide it from friends.
     
  11. Star*

    Star* call 911........call 911

    Hi & welcome,

    My son is 17 and is encopretic on demand. WHat I mean by that is if he is angered in some way and feels that messing his pants is vengeance then he will soil himself, sit in it and continues to do so at will.

    I have no tips to offer that worked for us, but I can tell you some things that helped us with the smell.
    1.) 13 mule team Borax in the initial wash with Tide or Gain detergent worked to get the smell out.
    2.) Leave a bucket outside somewhere and when his pants are found (because they are fantastic at hiding them) make HIM go out and wear rubber gloves in the farthest corner of the yard and wash out the feces from his underwear. This will NOT stop the behavior but you won't have to deal with it.
    3.) Throwing them away when you just can't take it anymore and buying .25 a pair underwear at the good will (wash them in color safe bleach) sometimes just lets you let it go for a week.
    4.) Febreze of any scent in your car especially if you have cloth seats and in the house for the furniture. I covered the chair he sat in with a towel and then covered that with a sheet so the smell wouldn't get into the fabric.
    5.) Wash ALL his clothes separate from anyone elses - wash jeans with underpants to save on water and soap.
    6.) LINE DRY those items as the smell of feces tumbling aroud in a dryer even after you've washed it out of the pants can make you gag.
    7.) A good mattress cover that is washed once a week helps keep the smell out of the mattress or get a plastic cover and wash with Lysol that you mix (makes 9 gallons smells real institutional)
    8.) Get a lidded trash can for the bathroom and keep plastic grocery bags in there (we kept them in the bottom of the cupboard) for disposing of baby wipes so your toilet doesn't get clogged.
    9.) Keep a spray bottle 1/2 bleach 1/2 water in the bathroom to spray the drain down every time he bathes or showers. IF you're on a septic system once a week pour vinegar and a box of baking soda in the bathroom he bathes in drain. Nothing unclogs and to have a plumber come out and have to deal with drains clogged with feces ? OH brother...you are talking SERIOUS expense.
    If you aren't on a septic try using something like Kaboom in the drains once a week....keep in mind that his feces will sit in the drain so if you are bathing after him use that bleach.
    10) You can try using MIRLAX it's tasteless but this isnt' a bowel issue as a rule, it's a control issue and make sure he's drinking plenty of water if you are going to start Mirlax to keep his intestines healthy. They can get dehydrated.
    11.) Get him gloves, a bucket and a scrub brush that is his and make him understand that YOU are not going to clean this up any more. He will be responsible to clean the tub out after each bath (you will inspect) and ignore the meltdowns he WILL have from doing this. Stand in the door way if necessary and let him scrub out the tub with comet.
    12.) He gets ONE towel, one washcloth and his initials are put on there with a magic marker and that is it. No one wants to smell his hiney on their towel and no one wants to use a washcloth that...well you figured that out.
    13.) Berating, yelling about it, making comments that he smells, making a big issue out of it....are not going to help at all. They only serve to frustrate you more and let him enjoy it all the more (in our case anyway)
    14.) No more swimming in the pool.
    15.) You can get him 7 pair of underwear and label them MTWTFSat SUN and make him give you the washed out underpants but more than likely this will frustrate you and he will potty in his jeans. It's worth a try to keep 6 pair and exchange them for unsoiled ones or ones he has soiled and cleaned out himself.
    16.) Don't beat yourself up over this. It's highly unlikely that he is lactose intolerant, or you're feeding him the wrong foods or that you are making him mad so he does it. Again, can't stress this enough - in his mind it's a control issue. Telling him it's a control issue serves no purpose that is something for you to know. When he feels like he's in control of some part of his life, it may, will, can, may not subside.
    17.) He's not going to wear pullups so don't waste your money.
    18.) Embarrassing him will only PROlong this. (Again control issue)
    19.) The best way we found to deal with difficult child and this was to be matter of fact - we locked up his underpants and did the trade for clean ones with him. This made him SO angry that he waited until we left to go to town, got in DF's locked bedroom through a window he opened with a school ID, he stole DF's brand new package of underpants, messed them and left them in the doorway of his room. Nice. Knowing that we wouldn't make an issue about it...(although DF wanted to put them in his pillow case and turn the pillow down) we left it go, when we came home he said "Im leaving and DF said "no...not until you get the underpants, the feces up off the floor, spray some febreze in your room, air out the house, clean off the pants and wash them outside in your bucket." difficult child got so angry he stomped off, and smeared them down the hall. This resulted in him cleaning the wall, denying it all (like DF must have stolen his own underpants, messed in them and left them in difficult child's doorway. - Yeah I know laughing with me.)

    We figured when girls took an interest in him that this would stop. Nope
    We figured that when he spent the night at friends house it would stop. Nope
    We figured he would outgrow it? NOPE.
    We hope that someday he'll stop - Yup.

    I can't use mountain berry air freshener any more either. Smells like feces and berrys (again I know...laughing with me not at me.)

    The best one was when we asked the psychiatric. to help us and so in a session he asked difficult child about it....and difficult child did it right there sitting in the mans recliner. And then there was the hour long ride home. ARGH.

    Hope something in here helps. Hope it doesn't last to 17 for you, but I can say the bigger issue you make out of it? The more it happens. And I did laxatives, suppositories, Mirlax, Colace, Pull ups, baby wipes, and was in counseling with him 2x a week since age 10, Residential Treatment Center (RTC), psychiatric hospitals, and the only time he stopped it at all was when he was at one of the RTCs - no rhyme or reason for nearly 10 months nothing....he came home and BAM right back to it.

    I dunno....I'm well read on the subject but with this child? Clueless.

    Star
     
  12. Marguerite

    Marguerite Active Member

    Esther and Star are both right on the money. AND speaking from considerable experience.

    Our problems were not quite so bad - or maybe I'm kidding myself here. We had it with both boys, however, plus a slight amount with easy child 2/difficult child 2, in that she would wipe it on the walls and then deny liability.

    With Autism Spectrum Disorders (ASD), there is also a factor of simply not being as aware of body signals. I do think this plays a part in the constipation in the first place. And also with BOTH boys (but in different ways) there was a sense of, "I do not like this, I do not like that my body produces a stool every so often. It is smelly, it is uncomfortable, maybe if I ignore it it will just go away."

    And when this happens when they are too young to be reasoned with (common in Autism Spectrum Disorders (ASD)) then you have an ongoing problems with toilet training, at a time when everybody else is successfully training THEIR kid.

    difficult child 1 managed to get toilet trained for bowels but it took a lot of effort and his grandfather literally bullying the **** out of him once a week. By then the kid would be frantic - he wouldn't put it in his nappy and he refused to sit on a potty or the toilet. He was just determined that he wasn't going to go.
    And for years, he was not good about remembering to go - we would need to remind him, nag him etc. We could smell him from the other end of the house - not that he was soiled, it's just that if you leave it in the body long enough, the smell percolates through anyway. We would ask him, "When did you last open your bowels?" and if he couldn't answer, or couldn't remember, we told him to take a good book and plenty of time. We were still doing this into his late teens.

    difficult child 3 wouldn't use a public toilet, or a toilet at school. He would wait until he got home. And wiping afterwards - he seemed to have no idea. I would get phone calls to come to the school to clean him up.

    We dealt with this by daily (or twice-daily) checks followed by insisting he clean himself thoroughly (followed by another immediate check). Part of cleaning involved changing into clean clothes and washing the dirty clothes. We keep several packets of disposable gloves always at the ready. Solid matter was to be removed from clothing and flushed, soiled clothing to be put into a bucket and soaked, and then the child was later called back to deal with the bucket - a manual wash (we have a manual plastic plunger thing which means you don't have to get your hands into it too much) which then went through a rinse, and finally the child could put the soiled clothing into the washing machine. No shaming in all of this - just matter-of-fact management and support while he did it.

    Changing clothes - you need to change EVERYTHING, or at least everything on the lower half. That stuff gets around and we found if the child was completely cleaned (and we checked) then putting on ANY garment he'd been wearing also put some of the smell back on, which defeated the purpose. besides, this way we were able to quickly build up a load of just that person's clothing, so other people's clothes didn't have to go through the same machine wash. We only insisted on soaking the stuff that was really soiled, the rest of it went straight into the washing machine.

    And Star is right - sometimes it's easier to just throw away the really worst of the soiled clothing. We buy a lot of op-shop clothing for difficult child 3 because he also chews his clothes a lot. difficult child 1 also wore out clothes quickly. Between the soiling and the wear - by the time they had finished with a lot of their clothing, it was only fit for compost.

    The smears on the walls - I remember a number of times handing easy child 2/difficult child 2 a scrubbing brush and bucket and telling hr to go scrub walls. And because she insisted it wasn't her, I also took a turn and got the other kids to have a turn.

    But you MUST avoid any attempt to use shame - it only makes the problem a lot worse. Accidents WILL happen and they need to not be afraid to go to you and say, "I messed up again." The sooner the soiling is dealt with, the less it has a chance to get spread. Finding a bag of soiled clothing from school when the kid gets home - it's not great, but it's far better than finding the same bag hidden in the bedroom, after it's been marinating for several months.

    Marg
     
  13. Gah. Okay, so it could totally get worse. *shiver*

    He won't swallow pills, doesn't matter how small. He gags and makes himself throw up. No bribing or threat of consequences will make it happen. Another thing our pediatrician of 12 years doesn't seem to understand. I really don't have a lot of problems with her, all in all, just don't know how much she understands of the Pervasive Developmental Disorder (PDD)-not otherwise specified stuff or whatever it is we're up against.

    He hates showers. It is such a raging battle to get him to shower. His latest thing is piddling around until there is literally no time to shower without missing the bus. I can't get him to take a shower every other day, it is a challenge to get two in a week. Especially if he did NOT wet the bed, I can't convince him of other body odors being important too. His hair is matted and oily, can't get him to wash it; maybe every third shower he'll actually get his hair wet. Can't begin to tell you how frustrating. His grandma cuts his hair and keeps it short, but it still smells bad.

    He was so mad at me this morning. He spent over a half hour stalling, didn't get his shower, refused to put on his Daytrana patch (I told him it wasn't ME he was hurting by doing that) and threw a fit because I didn't drive him out to the end of the driveway for the first time this school year (it's only about 500 feet but it is very dark when he boards the bus, and he usually has a very heavy band instrument but not this morning) ... screamed at me that I spoil his sister (I wait with her at the end of the driveway for her bus and then leave for work) and stomped and slammed doors and was just *bent* about the whole shower thing. Ticked off about losing his computer time for a week (due to slamming doors and screaming, not because of refusal to shower) and will be a jerk until computer time is reinstated. Ugh.

    This morning was such a circus that I never did make him a shake. :frown:
     
  14. Some more info:

    I know he is having BM's (when he does, holy cow they stink) but he is often constipated. His soiling is usually nearly liquid leakage from just a little to quite a bit, definitely soft when it comes out. He is not having complete BM's in his pants. I do believe that he does not feel it happen. I do not understand how he cannot smell it. His cover story, if you mention you can smell him, is that he has bad gas. I'm guessing that is what he says at school.

    He is often accused of not flushing the toilet, and sometimes he doesn't (usually when he only urinates) but at times his BM is so, uh, voluminous, that it won't go down after several flushes. I'm sure it's painful, which is that cycle again, of holding it because it hurts to go, but then holding it causes it to hurt more when he finally does. *sigh*

    His claims that he doesn't do it at his grandma's house, and her claims of the same, really made me feel like it had to be intentional, to hurt me, as he has been known to do and say a lot of hurtful things over the years since his dad and I divorced. But he has been, on the whole, much more kind and nice since the death of his father, while his soiling problem has gotten noticably worse. I really don't think he does it intentionally, and maybe his grandma didn't want to admit to me that he does it there as well, or maybe he's better at hiding the evidence; I don't know.

    The biggest struggle now, is getting him to shower at least every other day (at almost 13 I can't FORCE him) and getting him the fiber and such that he needs as he is EXTREMELY picky about food. He hardly touches vegetables or fruit. Eats mostly meat and bread, nuts, canned soup, crackers, cereal. Fought with him over food when he was younger and he would simply gag and spit out things he didn't want to try; just wasn't worth it.

    We have some Miralax from the last time we went to the pediatrician about it. I just have to figure out a way to make him a shake at 6 am without waking up the whole house, that he will actually drink and finish, that has what he needs in it. LOL (yeah, like it is that simple)
     
  15. wakeupcall

    wakeupcall Well-Known Member

    Hi My

    When someone was referring to "others coming along" who have been suffering the same issues, I am one of those others. My difficult child is twelve next week. WE GO THROUGH EXACTLY THE SAME ISSUES. I honestly don't think anything will help till they are ready to do something about it themselves. I took my son to a gastroenterologist rather recently (now that he's in middle school....eeeewwww), they x-rayed his colon, found huge amounts of feces, lectured him on going to the bathroom, said to give him Miralax every day, and sent us on our way. Big fat deal. It has done little. We have to battle him every day to go.....we figured with hounding him every day, maybe he'd end up going once a week. When he does go, the toilet is plugged, big time. We've done the making him wash his own underwear in a bucket, throwing underwear out, cried, punished, ignored, laughed, wondered what kind of parents we are, wondered what his REAL problem is.......oh well, you get my drift. When I can get him in the tub/shower, I wash him. That way I know we're starting off with a clean....slate. Yes, he cries and is embarrassed, but the other choice is him doing it himself and he fails to do it. Actually, it's better if he soaks in a tub (I know this is gross) so that his back side can be soaked clean. I wash his clothes independently of everyone else's, but I still have trouble removing the odor. I swear, I smell it in my sleep it's so bad. I wonder when this phase is over if I'll ever get rid of the odor in my house (maybe I'm overly sensitive or I've not found all the hidden underwear?). No one, and I'm referring to his multitude of doctors over the years, has ever been able to tell me if he has no sensations or if it's a control thing, or whatever. Most don't want to even HEAR me when I talk about it...though love giving it that fancy word "encopresis". Now that he's twelve I see a teeny, tiny, bit of improvement, but only noticed by ME. Perhaps it's only better because now we can mix the puberty perspiration with it and the two together is a whole new experience for my nose!

    I'm so sorry you are going through the same daily struggles. My heart goes out to you...been there done that.
     
  16. I would have to have a sick sense of humor to say that I am glad that I am not alone in this, but I guess it is good to know that someone truly understands what it is like.

    His pediatrician's office called and confirmed that they will do a referral to the pediatrician GI doctor. I'm hoping that the scare of going to the hospital and getting x-rayed and understanding the consequences of not taking his medications and changing his diet will help, although he is so stubborn I'm also somewhat afraid that I'll have the same thing happen ... no change.

    There is no way he'd allow me in the bathroom with him, he's extremely vocal about his privacy. He freaks out if I see him in his underwear in his room. I have to knock on his door about every 5 minutes in the morning for 20-30 minutes because it takes him that long to get dressed. I assume he is distracted ... usually it is toys or books if I peek in, but he screams at me anyway. :wink:
     
  17. wakeupcall

    wakeupcall Well-Known Member

    "Vocal about his privacy"??? Guess what, he's going to lose that privacy when he gets to the GI doctor. The first thing they did after talking about "history" is a rectal exam. My ds did okay because he was too scared to open his mouth. Then they took him for xrays, but the xrays were done in the same facility (no hospital). I thought the embarrassment of it would help a little, but it didn't do much. I expected a little more help in some fashion or another because this was Texas Children's Hospital, but it turned out like all the other appointments for this problem....nada! Please let us know what the doctors say....maybe they'll have words of wisdom to help all of us!
     
  18. Marguerite

    Marguerite Active Member

    "Vocal about his privacy" - stands for nothing in our house, if we don't g et compliance. But they DO get plenty of warnings; "if you do not wash yourself properly NOW, I will come in there and do it for you," and you have to be prepared to do it.

    However - it does sounds like you need to consider "The Explosive Child" techniques too. Get into his head and maybe use the information to find another way. WHY is he so reluctant to shower? We went through this with both boys, especially difficult child 1, and the problem turned out to be extreme fear of water. He especially hated washing his hair. This mean he had to have baths - OK, that worked for us. But we have our baths at night, not in the mornings. Mornings are terrible, to get anything done. At night, you can still insist on a bath even if they've stalled until midnight. And if you share baths, as we do in our house (OK, we have water shortages) then you make the dirtiest, smelliest person go last. On the occasions when there was poop in the bath, we had to empty the bath, swill it with disinfectant, and start again.

    If he won't let his mother wash him, then any handy male will have to do. Find a helpful policeman (primed ahead of time) to come in, in uniform, to bathe him? It should cure him of recalcitrance as well as stall tactics!

    But if he really is phobic about washing his hair, don't touch it. You can't go all the way in one go. Get his body clean, make him wear antiperspirant/deodorant, never put smelly clothes on a freshly cleaned body and deal with the hair by keeping it short. For now.

    We were eventually able to coax difficult child 1 to let us wash his head (hair included) with a wet face-cloth. No dripping of water anywhere, he couldn't stand it. But it was enough to wash perspiration out of his hair. You CAN keep hair apparently shiny clean, by daily wetting it and rinsing in warm water (see http://www.smh.com.au/news/richard-glover/the-no-shampoo-challenge/2007/03/22/1174153246888.html for more information - he is a very entertaining writer and speaker). A wet face cloth will do more than you think. And surely anything is better than nothing?

    And don't take it personally, that he doesn't so this at his grandmother's. First, her sense of smell may not be as sensitive as yours. Smell sense decreases as we get older. And second, difficult child 3 wouldn't use the toilet away from home.

    Leakage - definite possibility. This will mean you need to change everything he is wearing on the lower half. And cover your furniture with plastic until he's over this. Or make him wear Depends (or similar).

    If you can't get him to take medicine to overcome the constipation, don't try. Just boost the fibre in his diet. Buy a case or oranges, feed him six at a sitting. Peel them, cut them into wedges. Make an orange cake (there is a great, gluten-free recipe which uses whole oranges which are first boiled, then pureed into a cake - very yummy, tastes decadent but also very healthy). Here's a recipe - it's an Aussie recipe, so if you need me to translate quantities, just ask.
    http://www.goldsmithsintheforest.com.au/whole%20orange.htm
    And trust me, it's delicious. You would think, since the whole orange goes in, peel and all, it would be bitter - but it's not.

    But you need TWO things to prevent constipation - first, boost fibre. Second, remind him to go. Mark on a chart when he last opened his bowels and make sure he at least tries, once a day. or if you think he just happens to have a slower clock, make it every two days.

    I would sit and talk with him. make this problem a joint problem and not one of him shutting you out, and you nagging. Tell him this problem can be fixed, for the sake of his future health it NEEDS to be fixed, you know it's embarrassing him and it's also upsetting other people. You can BOTH work on this as a joint project, but he needs to tell you if something is too difficult, and you need to listen and try to find another way around things. BUT - he must wash, daily. If evenings are easier, then evenings it is. If the leakage is a continuing problem, then he will need disposable pads or disposable undies - yes, son, it IS now that bad. I'm sorry. The leakage problem can be fixed fairly quickly, with reminders, plus his prior agreement to at least TRY to open his bowels at the interval you both agree on. He lets you know of success (assuming you need to be told - you will probably know already, the smell will follow him out!) and you note it on the chart. Failure means he tries again later, maybe next day for sure.

    Keep the fibre intake up. Keep the water intake up. If he only drinks soda, then make it diet soda, to make sure it all goes through as water and not as a sugar solution. He can drink other sugar stuff if he insists, but he must have 8 x 200 ml glasses of water or water equivalent, a day. That's two and two thirds pints.

    If he can't take pills, don't force it. It's a Sensory Integration Disorder (SID) thing.

    And if he produces something that won't flush (we go through that often) there are several things you can do:

    1)Fill a bucket with water and throw it down. The extra force could do the trick.

    2) break it up a bit with a stick or something, then flush or do the bucket of water thing.

    3) My favourite - it's faster. Get a plastic glove, put it on. Reach in (don't let water inside the glove) pick up the object and take off the glove turning it inside out as you do, trapping the object inside the glove. Your hands are still clean. The object is now insulated. You can even weight it on the kitchen scales, if you want to really shock the pediatrician. If the object is too big to fit inside a plastic glove, then use a supermarket freezer-style bag (or a freezer bag). First make sure it has no holes. What to do with it afterwards? You can break it up and flush it, or you can simply bury it - it's halfway to fossilised already, anyway. What do you do with dog droppings, anyway?

    You need to drum into difficult child that for things to function properly, he needs three Fs - FIBRE, FLUIDS, FREQUENCY.

    Fibre comes in many forms, not always as medicine. Prunes are good, and you don't have to cook them. Eat them straight from the packet. or the oranges I suggested. Or fresh vegetables - difficult child 3 raids the carrots. difficult child 1 would eat a bunch of celery at a sitting, especially if spread with Vegemite. Sultanas. Raisins. Tomatoes. Watermelon. Stone fruit. Apples.

    If he won't eat them straight, then peel and core them. I use a melon baller to core apples. And make them for everyone on the family, not just him. Find a way that he can eat fibre. Find a way (and time) that he can wash and not have it turn into a fight. Don't force the hair until he is ready, but ask him to at least use a wet washer on his head. Brush his hair.

    And finally - DO NOT EXPECT HIM to be age equivalent. He is not. If you think you shouldn't be babying him, remember that kids like ours take a lot longer to mature. If other areas of his personal development are still as backward as his bowels, he still needs his hand held. This doesn't mean he is 'slow-witted' or anything like it. Both my boys are extremely bright. it's just that their development in just about every other areas has been badly delayed. By easing off the pressure, it has made it easier for us to get over these hurdles. Working as a team also helped a lot, especially once their anxiety backed off when they realised I'm there to help, not there to make them miserable.

    And when you look back, there are funny moments too. I remember difficult child 3 thinking he could simply stop needing to excrete, it was just something he had to put up with until he got older and more control. But alas, it was not to be. I heard him in the toilet one morning, sounding very exasperated with himself. "It's just not right - EVERY MORNING there's wee!"

    Once I stopped laughing, I took him aside and explained about how our bodies function, and WHY we need to excrete.

    He was so disapointed!

    Marg
     
  19. Josie

    Josie Active Member

    Marg,

    I would love to make your recipe. Could you translate, please? I would try to do it myself but gluten free recipes are risky enough without guessing at quantities.
     
  20. jamrobmic

    jamrobmic New Member

    I don't think it's always about control. My seven-year-old niece has this problem (no diagnosis, but she does have some quirks that make me wonder about her), and it seems like she really can't feel when she has to "go." She visits me on the weekends, and she asks me from time to time if we can check to make sure she's clean. She doesn't seem to want this to happen, but doesn't seem to be able to control it. Her problem also seems to be leakage, because there's not a lot of it, but enough to smell horrible and make a mess of her underwear (I still don't know how someone so small can smell so bad, lol). Sometimes when she visits, she doesn't have a problem at all, and other times, it seems like all we do is change underwear all weekend.

    When her mother (my sister) enrolled her in school, she told them about the problem so they could be prepared. They gave her some literature on conduct disorder :grrr:
     
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