Years of Encopresis... & not getting better

Discussion in 'General Parenting' started by MICHL, May 23, 2009.

  1. MICHL

    MICHL New Member

    difficult child (14!!!) has always has encopresis, and it's not getting better. He's never been "normal" or completely toilet trained in the normal sense. I've taken him to specialist, and two pediatricians, and followed their advice to a tee, but it's never going to work if difficult child doesn't help... it's only me & husband that want's him to get over this... difficult child doesn't give a wit.. Today I see a big spot on his shorts (he denied it earlier) and when I called him on it he says "i'm sorry" in the usual way... but he's not sorry, i can tell. The smell doesn't bother him, he denies it every time, he would rather poop in his pants if it means he doesn't have to stop his game or whatever. I'm venting--- i'm sorry, i've heard all the advice before... and i've posted many times. I've taken all the advice, and I don't want everyone to give me the behavior modifications again... We are doing them.....I'm just saying it won't work without difficult child wanting it to stop and so the treatments (miralax, maintenance miralax, benefiber...) and sitting on the toilet... can work. I'm just saying that it's sickening me and I can't help him unless he wants to help himself!!! Thanks for "listening"
  2. Jena

    Jena New Member

    Michelle hi and vent away.

    i'm sorry for what you and husband are going through with this and your difficult child. Any struggle with-our kids is difficult yet this one is aggrivating for you as well if there is no positive response from him regarding it.

    sending you alot of hugs

  3. TerryJ2

    TerryJ2 Well-Known Member

    Hi Michelle, I am so sorry to hear that.
    Have you made any changes to his diet? He may have allergies.
    My son is allergic to gluten and milk products. We can always tell, I mean ALWAYS tell, when he's had wheat.

    It's so hard at this age, when you're expecting him to act like a teenager but he's still acting like a preschooler. You have to remember that with-a Pervasive Developmental Disorder (PDD), he's several yrs younger emotionally.

    Do you have him do his own laundry? He should definitely be tall enough and capable of doing it. That should help a lot.
    My difficult child hates cleaning poopy underwear. I showed him how to use Shout, and rub the fabric, and he was clearly repulsed (yaaay!). It helped a lot to get him to stop some of his pant-pooping. But not all. I'd say we're 90% better, though, between behavior mod and dietary changes.

    Even though your son doesn't care, you have to teach him to follow your rules. Sometimes when my son gets in that mood/mode, where he says, "I don't care," I repeat it like a robot until he gives in and does whatever he's supposed to do. Other times, I charge him a quarter for ea time he says it. IOW, he's not allowed to say, "I don't care," even if it's true.
    Rules are rules, and you don't poop in your pants. If you do, you clean it up.

    The really hard part is not yelling. Sigh.

    Detach, detach, detach.
  4. wakeupcall

    wakeupcall Well-Known Member

    Michelle, I'm SO sorry. My difficult child will be 14 this year and we suffer the same thing. He never goes in the toilet, always his pants. We also have tried it all. He's been to lots of doctors, we've done the behavior mods, ignoring, him cleaning himself, etc. He thinks his underwear is "disposable". I can buy him new (dark colors of course) and in a day, they are all stained. I can't even get the smell out with repeated washings. I even followed suggestions like soaking in 20 Mule Team deal. It's horrendous and I'm soooo embarrassed to take him ANYWHERE. The odor makes me physically ill. I tell him all the time that he smells like man poop. He has a girlfriend and I thought that would make a difference, but not so. We are about to go on vacation to his elderly grandparents and I'm a wreck over it. How do you hide man poop odor from 85 year olds? We MAKE him sit on the toilet twice a day, that doesn't seem to make a difference. He might go, but he still goes in his pants later in the day. I'm with you, untl THEY want to stop it's not going to happen. We've done it all.

    I just wanted you to know that I understand.....and it's HORRIBLE. If something finally works, I'll let you know. Please, you do the same!
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Michelle, hi. I see your son has Pervasive Developmental Disorder (PDD)-not otherwise specified. Well, he's telling you the truth that he doesn't care if he He may NOT want to stop because kids with Autism Spectrum Disorders (ASD) are very quirky and tend not to care about social norms. I have a fifteen year old with Pervasive Developmental Disorder (PDD)-not otherwise specified. While he doesn't poop in his pants, he has been known to pee in a soda bottle so that he doesn't miss part of his videogames or shows. These kids get very obsessed in what they are doing and also do not respond to social norms unless they are both taught AND motivated. You have no idea how hard it is for me to get my son to take a shower. He doesn't care if he smells. He also puts on dirty smelly shirts rather than bringing them down to be washed because "I don't smell anything." I'm amazed his friends don't say anything when he's ripe (or the other kids), but they don't. He is "with it" enough to respond if his peers said something to him, but they don't. Kids on the autism spectrum (Pervasive Developmental Disorder (PDD)-not otherwise specified) ARE different. You can't MAKE them not different. Interventions are very helpful. Is he getting a lot of help in school? My son did--it made a world of difference. That doesn't mean he's still not quirky. He is, but he's a lot better.
    Many k ids with sensory issues, part and parcel of Autism Spectrum Disorders (ASD), do not even know when they have to potty. They don't feel it like "typical" kids do. Has he ever seen anyone specializing in autism? Pervasive Developmental Disorder (PDD)-not otherwise specified is a form of autism. There are various degrees of how badly a person is affected. The only advice I have is keep trying--have him clean it up, make him do his laundry, maybe one day somthing will happen to make him care.
  6. Marguerite

    Marguerite Active Member

    Sometimes a kid with Autism Spectrum Disorders (ASD) will care because they can be fastidious. It varies and sometimes seems paradoxic. If the child also has sensory integration issues this can be a huge factor.

    We found we got cooperation as long as we nagged enough. But if you have a kid who WANTS to poop in his pants (maybe he likes the feeling) then you have to make sure the payoff is countered by enough negative consequences. Not easy when we're trying to avoid the ppunishment aspect.

    Getting the child to help with the cleaning process was for us the best way. Two things need to be cleaned - the clothing, and the child's body. The body needs to be cleaned enough in order to prevent any skin rashes and irritation. And the clothes need to be cleaned (SOMEONE has to do it; the person responsible, if they are going to keep doing this, need to learn to clean up afterwards in order to take their habit into the realms ofpotential independent living).

    To clean up and eliminate smells - it can be done. And 85 year olds actually are not likely to notice the smell as much as you (or maybe even worry that they are to blame, and keep quiet!).

    Clean-up procedure -
    1) Put on gloves. Either use disposable gloves, or washing up gloves which are kept solely for this purpose.

    2) Scrape solids into the toilet.

    3) Put a bit of soap onto the soiled area, make sure the clothing is wet. Rub and rinse.

    4) Deodorise begins now. Splash on some white vinegar. We keep a big bottle in the laundry, as well as some in a mist spray bottle. Then put the clothing in to soak in WARM water (not hot) and enzyme detergent. Let it soak overnight.

    5) Machine-wash as usual - COLD wash. Do not hot wash. A hot wash can cook smells in.

    If this isn't enough, repeat from the vinegar stage.

    We use this for sweat smells/stains, blood, any protein stain or smell. Boys stink especially teenage boys.

    Also important - you don't just change the undies. Even if the stains don't go through the fabric of the undies,s the smell does and EVERYTHING the person was wearing at least on the lower half, has to be washed. Only the stuff that got directly pooed is likely to need full treatment, but it ALL needs to be cold washed. I have tried at times to get away with just changing the undies, but have had to accept defeat when the smell lingered, because it had contaminated the outer clothing too. I user the sniff test after the child has changed and ogten wouldsupervise the changin g to make sureof compliance. I also would supervise the body washing if I felt it was warranted. Any child feeling sensitive about modesty - sorry, that has to be forgone if you poo your pants. I used to insist on physically checking that skin was clean. Generally though, Autism Spectrum Disorders (ASD) kids don't care much about modesty under those circumstances either, when it's a health check.

    We made our kids learn to do this washing/soaking procedure. EVERY member of our household is required to splash their clothes with vinegar if they are stained or smelly. The enzyme soak isn't always needed.
    I've also had some appalling clean-up jobs, including difficult child 1's socks which would be STIFF even after a machine-wash. I've done a double and triple soak of the socks (in a bucket) plus I have a hand-washing gadget like a hand-pumped washing machine agitaror, I use it in a bucket with difficult child 1's socks. I eventually got the once-white socks rejuvenated back to pale beige. That was an achievment.

    My piece de resistance was a suit coat, a black one, which the drama club gave me to have cleaned before I was to wear it in a pantomime (I was playing Prince Charming). The previous wearer had been a middle-aged unfit man who rarely bathed and never wore deodorant. He was also a chainsmoker. The coat stank badly and I was told that if I couldn't get it clean, to put it in the compost heap and charge a new one to the drama group. They expected the bill.
    So I did the vinegar soak and then the enzyme soak. Thee water turned brown. So I repeated the soak. The water went brown again, slightly paler this time. Then I did the first machine-wash. The smell was gone but the rinse water was still brown so I ran it through a full cycle again (from vinegar). Finally I declared it clean enough to put on my pristine little body. I'd used essential oil in the final rinse water so it now literally smelt of roses. Rosemary, actually. Lavender is another good choice.

    When this is done regularly, you rarely have to repeat the wash cycle. We only did it with a backlog, or when difficult child 1 wore the same clothes literally for months. I had a terrible time getting underwear from him on wash day (I wonder how his wife is managing?). For poo smells/stains, one soak would probably be enough.

    We don't have encopresis issues any more, but we DO have some appalling poo stains/smells - manure. difficult child 3 changes the water in the chicken pen and is either very clumsy, or is deliberately making a mess by spilling the water and making puddles, then playing in it. He comes in smelling awful and with clothing soaked in ripe manure. But it washes out easily.

    Something important to remember - the degree of difficulty in cleaning up is NOT really related to the severity of the smell or stain. If it were, then TV advertorials would have a harder time making some clean-up tasks look miraculous.

    The ultimate way to impose a rule of life - "you either will not or cannot get involved in changing this habit. Therefore you must now become your own primary carer when it comes to cleaning up your clothes. I've been doing it for long enough. One day you will be living away from home and laundromats won't allow poo stains unless they've been pre-treated. So in order for you to eventually live independently, you must now do what I have been doing. We all eventually have to take responsibility for our own care. Your time starts now. I will help you and show you, but you now must do it. And don't even THINK about just living with it - this is a house where others live, and poo smells are NOT acceptable!"

    Keep reminding him. And when accidents happen, clean up must begin immediately and HE must take a role in cleaning up.

    Pooing his pants is no big deal, if he cleans it up immediately and thoroughly. If he really can't help it - OK. But there are NO excuses for inflicting it on other people sharing the house.

  7. Fran

    Fran Former desparate mom

    I relate to your feelings of frustration, embarassment and disgust. At 14yrs old you can not imagine anyone else lived through this. We have and we survived.

    The issue is a non issue. I'm not sure what happened but I think my difficult child's nervous system matured. He became more aware.
    I don't know what's different since at 14 it became his issue and not mine. If he smelled then he had to go take a shower and change clothes. I didn't want to be involved with his bathroom habits any more unless he had a problem that he couldn't fix. I wouldn't take him with me anywhere if he smelled. In the end, I couldn't fix it but I found a way to be disinterested.

    It's a horrid problem within the Autism Spectrum Disorders (ASD) groups yet I see very little info from the professionals who deal with kids like ours.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg, I agree with you, however it seems like this particular Autism Spectrum Disorders (ASD) child is oblivious (like my son) or just doesn't care. These are the two extremes of the spectrum and there doesn't seem to be much in between. My son has a stellar looking room. Everything must be in place. But he doesn't know or care when he stinks :D. I really do have to force him to shower. The peeing in the bottles was very annoying. When asked about it, he'd say, "I was in the middle of (fill in the blank)." It's a real pain when the child doesn't CARE. My son KNOWS when he has to go to the bathroom, but at times he doesn't care. He would never pee in a bottle at school, for example, but has done it many times at home and hidden the bottle in his closet (ewwwwwww) even though he wants his room to be completely clean and well-organized. To him they are different. It's a really horrible problem if your child does not care and it's very hard to make them care. The only thing that really motivates L. is offering him money, which I don't like to do. He's too old for me to bathe or I
  9. Marguerite

    Marguerite Active Member

    It does seem to be a contradiction, but I agree - it does happen that way sometimes.

    At 14, I was still threatening to wash my boys. I don't need to with difficult child 3 but he probably would let me. The threat was enough for difficult child 1, he would go and shower himself if I threatened to do it for him. I would have done it, but he would probably have insisted on wearing "budgie smugglers", or Speedos.

    I remember the bottles of urine. I would have discussed with him about the risk of someone accidentally drinking it, and then made him go empty it. You probably did something similar.

    I also hate having to use bribes but I will if I have to. One good bribe which worked for us, is a bribe of my time. We did it for meltdowns, but it really helped - difficult child 3 loves computer games and loves us playing them with him. So the incentive became - comply, and you earn 15 minutes of me playing a computer game with you, for each day of compliance. We'd play Mario Party.

    This was a non-money option and worked really well as a reward. I'm going to have to bring it back in again.

  10. MICHL

    MICHL New Member

    Thanks everyone for your posts.. I will keep trying to do my best to motivate him, and using the miralax & fiber to keep things moving, & sitting on the toilet, & doing so before any games, etc.. The hardest part is just his not caring about any of it..
  11. susiestar

    susiestar Roll With It

    I am so very sorry you have to deal with this. It just is so UNFAIR that after all the other stuff you have had to accommodate or get used to or treat that you must also have this problem!!!

    I am sending a lovely bouquet of SuperStrength Smell Neutralizer Stain Eliminating Hugss!! (Horribly Unfair Gross Situation Stopper!)

    This is a wonderful brand new product for parents of children who have smelly problems! It was created especially for MICHL and can be shared with anyone she wants to!

    Each hug will envelop you in a lovely gentle hug that provides a 26 hour barrier to keep foul odors and yucky stains away from YOU!

    This lovely bouquet (beautiful enough to display anywhere) contains 2 dozen of our special Hugs! And, since you are a long time Aggravated Stink Sufferer (We do NOT use an acronym here!), Your very special Bouquet will NEVER run out of Hugss!!

    I am sorry your difficult child is not interested in helping himself. You are quite right that NOTHING will work until HE wants it to. While it may be part of his Pervasive Developmental Disorder (PDD), that doesn't make it any easier to cope with. Other than those special Huggs! (created especially for MICHL) I can only offer support.

    Go ahead and vent. We ALL need to sometimes. Thanks for being so clear in what you want from this vent. It is hard when you have tried everything for so long and NOTHING works.


  12. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sending gentle hugs your way. I'm sorry you are having to deal with this.
  13. MICHL

    MICHL New Member

    Thanks Susie~!
    I would like to share this with "wakeupcall" and everyone that has this issue or a similar issue with their difficult child.
  14. wakeupcall

    wakeupcall Well-Known Member

    I NEED it, thanks from me, too!!!!
  15. TerryJ2

    TerryJ2 Well-Known Member

    Oooh, Susie, I love your hug bouquets! I will remember that the next time I find poopy pants. :) Which should be any day now ... ;)
  16. Joony

    Joony New Member

    First time here so be gentle please! I have just split from my partner over his stepson's encopresis, well actually not just that but that was probably the final straw.

    My partern's son came to live with us at aged 11, don't know why he wanted to leave him mum, he is from Portugal so it was a big transition. Since he came to us there has been nothing but problems; problems with school, problems with him understanding simple conmands, rules of the house etc; and to top it all him leaving excrement all over the house and outside.

    He shows no embarrassment about it; I know this cud be denial, but he actually throws his stained boxers out his bedroom window knowing someone in the family will fine them. He is a kid who truly has had a neglectful upbringing. He is now 13 and this has been going on for years, at first I had no idea what it was; only thru my own research have I found out it is encopresis.

    My partner kept putting his head in the sand and my stepson kept pretending it wasn't happening, I told my partner over the last two years that I wasn't going to carry on parenting his child as it was his responsibility but still nothing changed - my head got sore always banging it against that wall.

    Now I am free of them both; please don't think I am being unsympathetic but you can't make something work if the other people involved are just not interested - I can honestly say the last two years of my life have been the most traumatic, stressed and upsetting in my entire life and I am just so relieved now to be free of it all.

    I still want to have an active role in both my partner's life and my stepson's; I care about both of them. Stepson has finally got an appointment with Hospital next week to check out the encopresis, or at least have it diagnosed.

    I truly feel I am an expert on the subject now! I have been telling my partner to keep stepson on the laxatives, get him to use the toilet after breakfast and again after dinner to get the poop out and that there is a good chance the Hospital will `clean him` out to get things started off.

    Just really wanna say hi and I hope you don't all think I am a rubbish stepmum; the problem wasn't really my stepson it was my partner's inability to work with me as a team and actually take on the role of being a parent.
  17. Fran

    Fran Former desparate mom

    Hello and welcome.
    As far as I can tell, there isn't room for judgement of peoples choices. We all do what we can to survive. I would probably do the same if my mate wouldn't cooperate.
  18. Marguerite

    Marguerite Active Member

    Joony, welcome. Nobody here would judge you for leaving. You had to make your choices and you're right, you can't make anyone do something if they're not willing to take personal responsibility. Here's hopeing that some positive change comes in now.

  19. SageCupCake

    SageCupCake New Member

    I could have written this post 10 years ago. I remember the frustration, the anger that he just didn't care. The embarrassment of being the smelly kids mom. He also was never completely potty trained it seemed.

    At 21 my son no longer smells (well not like poo anyway). He worked it out on his own. Nothing that I did seemed to help, certainly not getting angry and trying to control it.

    I have to say the turning point for us came when I had access to the internet and a wealth of information about encopresis. When I figured out that it was the same for others and that it wasn't just my son being defiant. I was able to let go of the anger and frustration. I dealt with it the same as I would any other illness. I don't know if it was that or him maturing but it just gradually went away. Now it is just a bad memory...but for me the worst part is my reactions. I wish I had had more support and information to start with.

    With that in mind I send you hugs and an open ear and a soft shoulder. This too shall pass. I know from where you sit it may not seem that way but hopefully soon you will be looking back on this as just another blip on the radar of life.
  20. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Well, SageCupCake, I could have written your exact reply. It was finding a support group on the internet specifically for parents of children with encopresis that helped me turn the corner, although it did take a good few years for the change to kick in deep inside me, because I had become so deeply depressed because of the encopresis and dealing with it.

    My difficult child has been clean now for about eight years. He is 22 today. It is still a sensitive subject and he will not allow me to mention it.

    If anyone says that her child doesn't seem to care -- don't believe it. They have a problem, a physical problem, and they themselves don't know how to cope with it, and the only way that they can cope with it seems to be to develop some sort of self-defense mechanism which involves pretending that it just isn't happening. But I can assure you that they do care. Friends and family will not want to be near them -- that is enough to make them care.

    My heart still aches for every child with encopresis and for every family. I don't respond these days as much as I used to when there is a post about encopresis, because I still am obviously very tender on that subject, and now as I write this the tears are welling up in my eyes.

    Encopresis is a vicious circle which is very hard to get out of. I don't know why it happens (well, I do know that it almost always happens because of constipation, but what causes the constipation and the consequent complications of encopresis is beyond me), but usually it seems to disappear at puberty, one way or another. Perhaps at puberty there are some muscles there that come into play or become stronger. I wonder if any research has been done into the subject.

    I once read that 3 percent of children suffer from encopresis. That means, one child in each class. That's a hell of a lot.

    Michl, I'm pleased you're going to a pediatric gastroenterologist. That is the very best move you could make. I wish you every success. Keep us informed as to how it went.

    Love, Esther