Encopresis Info Please?????

Discussion in 'General Parenting Archives' started by -, Oct 8, 2000.

  1. Guest

    Hi all. Not exactly a good subject here, but need info on this encopresis problem.... My son has suffered from this from the beginning of time. He's on softeners full time, etc, etc, etc. It now seems it's getting worse -- the Residential Treatment Center (RTC) he's at had him re-evaluated and the doctor's have added an additional softener - now he's on two - plus metamucil.....Is there anything that truly works? Is there a "cure"? Any info would be appreciated....

    Thanks. Shellee

    35 Yrs Old, certified surgical technologist
    11 Yr Old Son, ADD, ODD, Obsessive Compulsive Disorder (OCD), Pervasive Developmental Disorder (PDD)-not otherwise specified, Anxiety,
    Depression/medications - Seroquel, Welbutrin, Zoloft, & now Tenex. Youth Home since 2/00.
    Very Supportive Farmer Husband.....
  2. addie

    addie New Member

    We have a board resident expert - Esther from Jerusalem - but she has not been on in a while - if she's still reading, I hope she can help.
    If not, can anyone remember the sites she posted?
    I lived with it for 20 months with a 9 yo. Nothing worked - did the softener route ad nauseum, also pants/shorts/underwear/pull-ups/and bare ass naked under a loooong t-shirt while at home - the latter worked for a while.
    Did the toiletting routine at home and school. Some days we had some success - mostly he pooped anywhere from once to six times a day. And ALWAYS when going someplace - doctor, hairdresser, dentist ... all of which he appeared to love.
    The long and the short of it is - nothing worked. BUT ... there seems to be much evidence out there that they grow out of it.
    Also - and I am sure you know this - for whatever reason they do it - they can't help it. So minimize, clean up, don't threaten/cajole/bribe/punish etc - hard not to - but it does not work. Just - quietly and unobtrusively, deal with it - the most you can do, I think, is without fanfare, show your pleasure when he poops in the toilet, and wait it out. It will stop, one day.
    Darn - wish I had those sites - perhaps search the net under encopresis and eneuresis - though encopresis is the one to search for mainly, as I know it's the title of the site.
    Good luck - can tell you more that I tried and what happened if you want to email me.
    Main thing is - don't make him feel bad about it - I am sure you don't. It is soooo frustrating, and I do understand.

    Adoptive/therapeutic foster mom, supportive husband
    3 adoptees: 14 yo m, easy child, ADD/?ADHD, Ritalin; 12 yo f difficult child, ODD, Learning Disability (LD), sp.ed.,Risperidal & Dexadrine; 10 yo f easy child with opp.def.beh; Adopted at 4, 4 and 2.
    2 foster: 12 yo f, ADD, Learning Disability (LD), sp.ed, Dexadrine; 16 yo m, bi-polar 2, lithium.
    2 part-time voluntary: 19 yo m, Paxil; 18 yo m, easy child.
    3 dogs, 4 cats, all help with therapy
    "Tomorrow is another day."
  3. Guest

    The only thing that helped my sons bowel problems was eliminating the major food sensitivities from his diet(all milk and dairy, milk chocolate, whole wheat/grains) and treating his immune system.

    18yo easy child mild CFIDS/CFS aka neuroimmune dysfuction

    11yo difficult child/?easy child almost from birth(NEUROIMMUNE DYSFUNCTION)his symptoms were diagnosed as ADHD at age 5. I now know that his symptoms were better described as Aspergers. He had sensory problems,temper tantrums,sleep problems,night terrors,bladder and gastrointestinal problems. Progressed at age seven to severe rages,oppositional behavior,more cognitive dysfunction,dysgraphia,Obsessive Compulsive Disorder (OCD),mood swings,fear,etc.
    immmune/autoimmune/viral(Autism/Pervasive Developmental Disorder (PDD),Aspergers,Learning Disability (LD),ADD,hyperactivity,language disorders,learning disorders,CFIDS,Obsessive Compulsive Disorder (OCD),Tourettes,cognitive dysfunction)

    Dysregulated Immune System,causing central nervous system dysfunction. Abnormal shutdown of bloodflow in the temporal lobes, with dysregulated frontal lobe.
  4. Guest

    I ditto Cheryl.

    My difficult child stopped wetting the bed when we took away dairy & wheat (casein & gluten). Now, when he gets an accidental very small amount of gluten (like yesterday) he had to go in the middle of the night & his underpants got a little wet, but he was able to wake up & get to the bathroom.

    Nightmares end, also when you deal with the food sensitivity issues. Not easy, but well worth it!

    Straw [​IMG]
  5. Guest

    Thanks all....My son is 11, suffered from encopresis since age 3.....We first did the enemas, followed by large amounts of mineral oil (under dr supervision), followed by suppositories, followed by daily stool softeners. So, here we are - same place as we were 8 years ago. The dr said if there were anymore stool in there, he'd explode.
  6. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Hello to Shellee,

    I don't think I have even had time to look at the ODD site for at least a fortnight, and today I was finally back at work and just zoomed through all the titles to see what I had been missing (It really pains me that I haven't got time to read through everything, but I just haven't!). And I saw the posting on encopresis. How could I not reply?!

    I don't really remember what I have written in the past about it. I can only re-write my own experience, which in my opinion is pretty dismal. I will try and be concise (hard for me!!!).

    After being potty trained and completely clean and dry for a couple of years, at the age of four and a half Oriel suddenly started to soil (not to wet, only to soil). We thought at the time that it was emotional trauma resulting from the Gulf War and being closed up in the sealed rooms. With hindsight I would say that it was a result of maybe becoming slightly constipated as a result of being closed up in the sealed room. What a difference.

    We went through eight years of pure hell. My pediatrician GP, the few times I asked her about it, said with a wave of her hand "Oh Esther, you don't want to put him through all those dreadful tests, he will surely grow out of it." LIke hell he did. It took him eight years. We went to psychologists, physiotherapists, and more psychologists. All of them pointed a finger of guilt at me and my husband, saying quite definitely it was an emotional problem, it was a problem of my husbands and my relationship with one another and with Oriel, and in particular the result of my symbiotic relationship with Oriel (he is my youngest, the youngest of eight children, and of course I love him. What's wrong with that?).

    About 18 months ago we got Internet here at work, and I fed in the word encopresis. I spent three days weeping at the computer and everyone here at work just tiptoed around me as I cried, and shouted "Oh!", as I realised there was a reason for it.

    The great discovery for me was that it is almost always a PHYSICAL problem caused actually by constipation. I discovered a small intimate and wonderfully supportive support group, based in the UK, set up by a wonderful man called Tony. It is called the Encopresis Information Exchange

    My best news is that as I calmed down (well, calm is a relative word, isn't it, how can one be calm with an ODD child?), he just grew out of it. Yes, just like that. They say that very very many children grow out of it in puberty. I don't know how. I just know that it happened for us, and that for over a year now he has been clean.

    I myself had been in very bad depression from dealing with all the crap (in ALL senses of the word). I evolved my own way of dealing with it, which was very simple and this is how it goes:

    I made sure I had a very ample, more than ample, supply of underwear and pants in the cupboard. All I asked of Oriel was that when he was dirty, he would go and shower off, and change his clothes. Put on clean ones, and put the dirty ones on the porch behind the bathroom next to the washing machine. Other than that, having discovered this wonderful ODD support group and learning a thing or two from all the wonderful people here, I started to give him hugs, and to tell him that I love him. Today I can do it with no problem. That was the only thing I knew one hundred percent that I was doing the right thing, telling my child that I love him and hugging him. He reciprocated, and to this day, despite all the rotten ODD stuff, we still have hugs (and he is now 14, no easy age for sure!).

    I didn't have any set-to's with him about washing out his clothes or anything like that. I just couldn't cope with any extra tension.

    I wish you the best of luck.

    I am here at work this week, and then next week will be away the whole week (more Jewish holidays -- the last ones for now) and after that we should be back into a normal routine (whatever "normal" is in this country these days!!! Oh, how depressing everything is!).

    I hope this has been some use to you. I think it is a subject that should be brought up and aired and discussed just about as often as possible, since apparently about 3 percent of children suffer from it, that is one in each classroom, and that is a hell of a lot of children, and everyone tries to keep it a secret (we certainly did) and it is important to know that a lot of children and their families suffer from this, and suffer a lot. I could tell you stores about how awful it was to deal with and dreadful situations, I could make your hair stand on end! But I won't for now.

    Keep your cool, and try and keep smiling. The child really and truly can't help it. I did describe the physical side of it ages ago, I remember now, and if you want me to do so again, please write. I shall be here tomorrow and the day after.

    All the best, and love to everyone on the board,


    PS. One of the reasons I haven't been able to look at the board is a very good one (well two, really). Two new grandchildren have been born to us, a boy seven weeks ago from one of our sons, and a girl two weeks ago from one of our daughters. That has taken some time out of my life too. I now have 10 grandchildren (and one on the way in two months time). I define myself as "overburdened with blessings"!!
  7. addie

    addie New Member

    I don't care what we call it - telepathy or prayer - but there was Esther just when we needed her! Thank you thank you to whatever power made you look at the board today, Esther.
    Please - could someone archive Esther's info on encopresis - at least the web site - as it comes up again and again? Thanks.