What kind of symptom is NO~~~

Discussion in 'General Parenting' started by wakeupcall, Dec 7, 2009.

  1. wakeupcall

    wakeupcall Well-Known Member

    NO control over bowels, isn't interested in controlling bowels....doesn't care, won't, can't, isn't....???? difficult child is 14 1/2 and no matter what, he isn't controlling his bowels and never has. After fourteen years of this, I'm tired. We've been to gastroenterologists, pediatricians, psychologists, psychiatrists.....you get my gist. We've not punished, we've punished, I've cried, husband has threatened, he has taken Benefiber (and all the rest), we've tried altering his diet, we've ignored it. Now that he's bigger than I am....I call it man poop.....floating in the washer and has to be fished out. I have him do it if he's home, but it has no impact on him. When will this end? Way back in the Dark Ages, they put children in a home who couldn't control their bowels. I'm SO frustrated and so freakin' tired of doing this and having my home smell like an outhouse all the time. What could be his problem? What can I do? To me it's the single biggest problem in our home.....husband disagrees, he says it's the defiance, but it also isn't husband who's cleaning it up many times a day.
    Last edited: Dec 7, 2009
  2. Josie

    Josie Active Member

    Have you tried a very strict gluten free diet? I've read about adults who couldn't control their bowels until they went girlfriend. You can't count on a GI doctor to figure this out. Most of them go by the testing for celiac disease and if it is negative don't think of gluten as the cause. However, in the celiac/gluten intolerance world, probably at least half of the people figure it out on their own.

    I have also heard about soy intolerances causing this problem. Soy is in almost everything now.

    One of my children had stomach issues that went away when she gave up gluten and milk. She had been tested by GI doctors at least 4 times for celiac disease by the time she was 8 and it was never positive. We finally just tried it on our own and it worked.

    My other daughter didn't have stomach problems but was diagnosis'ed with ODD. She was on an a/d and we were going to have to add an a/p to help with her aggression issues. Gluten intolerance can cause mood problems so we put her on the girlfriend/CF diet and her behaviour problems went away. She is now almost 14 and medication-free. Unless she cheats on her diet, she is a pleasure to be around now.

    If you haven't already tried it, it could be a two-for-one solution to the bowel and mood problems!
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Sounds like a sensory problem to me. Is he maybe on the autism spectrum?
  4. gcvmom

    gcvmom Here we go again!

    I for one would be hounding one or all of the specialists, whose advice you've followed, demanding more answers. They tell you to do A, you try it, it doesn't work, then they need to come up with a Plan B, or C or D or... Don't let them tell you to PUNT either!
  5. TerryJ2

    TerryJ2 Well-Known Member

    I'll cast my vote for the strict gluten free diet, and that he's on the autism spectrum, with-sensory issues. It all fits.
    STRICT gluten free diet means no fried chicken; only gluten free frozen french fries (if you read the labels in the grocery store, the fries have wheat added to them); no wheat cereals; no wheat bread; no wheat pasta; no corn dogs (the batter is corn and wheat mixed).
    I know you said you've tried different diets, but this is long-term and strict. One week won't cut it.
    Also, cutting out the wheat will cut back on the defiance. No kidding. The irritation in the bowels is more than an irritation; it's lack of nutrient absorption. That can cause huge mood shifts.
    (by the way, have you tested his iron levels, and added iron to his diet? It's common for people on the spectrum to have iron issues.)

    Sorry, probably not what you wanted to hear. But I'll swear by it. It's not a cure-all but it will get you ahead to the point where at least you don't want to kill one another every day. (Just once a wk, maybe. :) )
  6. Christy

    Christy New Member

    Does he offer any excuses? Can he feel that he has to go? Does this happen at school as well as home? How does he feel about cleaning up after himself. Any embarrassment? How are his social skills? I'm assuming the medical professionals did not find any physical reason for the encopresis? Are there other behavioral issues that would lead you to believe it would be defiance?

    Sorry you ae struggling with this, I can imagine how difficult and frustrating it must be.
  7. wakeupcall

    wakeupcall Well-Known Member

    You guys are awesome. If anyone on this continent eats wheat, it's my little boy. Last night his behavior was off the charts...not to mention the bowel problems that he has every single day of the year.

    No doctor has ever mentioned the autism spectrum, but particularly his teachers, say that there are times that he "shuts down" during class.....won't look at them nor do a thing they say. I've often wondered if perhaps he is mildly autistic. It would be very difficult....he gorges food, stashes away in his room, etc. Trying to convince him to not have wheat at school would be a laugh (remember the defiance..). He'd have to be on board with this or it would never work.

    I'll do some research on gluten. Is the only safe way to go about it is with the direction of a doctor? From what HOPE says, a test for celiac disease could be false. Should I take him to a regular doctor, allergist, or voodoo specialist? (Just kidding....)
  8. Josie

    Josie Active Member

    I would have him tested for celiac disease since he has the bowel issues. You never know, he might have true celiac disease. Then it would be easier for everyone to buy into it. There is a celiac panel that you can ask your regular doctor to order. I am surprised that they haven't done this already.

    If you get him tested, don't try the girlfriend diet until after the test. But do try it, either way. My two kids, my mother, and I all are on it and none of us has had a positive test. Even my husband mostly sticks to it without a positive test.

    You don't need a doctor to do the diet. In fact, be prepared for them to discourage you in trying it.

    I would add that strict means nothing with malt or natural flavors in it (could have barley) and no fast food at first. There might be fast food that is OK but it is risky and if you are trying to see if it works, you won't know if he is eating fast food. I do not even let my kids eat Frito Lay products because there is a possibility of cross contamination and their behaviour improved when we cut them out.

    I tried the girlfriend diet once and didn't worry about cross contamination, natural flavors, or hidden gluten. I didn't really notice anything. A few years later, I tried it again and was very strict and it was amazing how much better I felt.

    To encourage you, everyone in my family that has done the diet and been strict about it has seen a difference in a few days. I have read that for some people, it takes longer, though.

    I suggest a big incentive to him for trying it for a specified period of time. And letting him eat whatever else he likes that is girlfriend so he will see his life isn't over if he can't have gluten. I wouldn't try to substitute a girlfriend version of his favorite foods right now but look for things he likes that are already girlfriend. It is a hard diet for a teenager to do, but it has to be better than having the kind of bowel problems he is having.

    www.glutenfreeforum.com is a good website to find out about this.
  9. TerryJ2

    TerryJ2 Well-Known Member

    There are two celiac tests. If you do the blood test, be sure you have an expert read the results, because most pediatricians will assume he's got it, when in fact, their is a more detailed layer of info to be read.
    The other thing is, he can have the invasive test done, which is to see if the villi are flattened. No fun at all. Save that for later.

    You can go through your house and throw out or give away all wheat products. I was doing it piecemeal and it didn't work (although I still have Quaker Oat bars in my locked ofc.) But I mean the bread, pasta, etc all has to go. Replace every bit of it.
    Work it into your budget. It is worth it. (If you think it's expensive, consider how much you pay for pharmaceuticals and dr appts!)
    Assume, even b4 he is tested, that he is allergic.
    The only thing it could hurt is your budget. :)

    Tell difficult child that if he has celiac disease, he can get cancer. No kidding. You know how defiant these kids can be. Do whatever you have to do. If he does not have it, explain how an allergy sucks the nutrients out of his system. Get the dr to explain it. Call the dr ahead of time and make sure s/he is on the same page with-you and doesn't blow it off as "just an allergy."

    In the meantime, you've still got to deal with-the laundry, and his inability to react to his body's signals. I'm going to ask my difficult child how much he remembers of all of that and see if I can get some ideas.
  10. Josie

    Josie Active Member

    My daughter was very defiant when we started this. She was 10. I told her it might help her to control her anger better, which she wanted to do. After a little while on the diet, her defiance had lessened enough that she said, in her most defiant voice, "I am only doing the diet until I am 18!". Works for me.:D

    Now, she doesn't even say that. She believes in it, even though she sometimes gives in and cheats.
  11. TerryJ2

    TerryJ2 Well-Known Member

    LOL, Hope!

    I asked my difficult child if he remembers much about his encopresis, and what advice he could offer. He said he didn't remember it (although the baby wipes are still in the bathroom and he still uses them) but he kind of remembered being grossed out by the laundry.
    I suggested that it felt weird to use toilet paper down there and the wet wipes were softer and easier because they were wet. He didn't argue, which for him, is a yes. :)
    But he had no suggestions on how to be aware of the sensation of having to go.
    Oh well. I tried.
  12. MICHL

    MICHL New Member

    Unfortunately I'm in the same boat. We been to various doctors, and for a long time did benefiber, softeners, etc, etc, etc, etc, with no success. In your profile, one of your difficult child's diagnosis is "developmental coordinator disorder" It's interesting because at one point my difficult child' (1st diagnosis long long time ago) was "regulatory disorder type 3" No one has ever heard of that. He also has "Pervasive Developmental Disorder (PDD)/Odd/ADHD" according to all the "experts"... Mine is also 14 1/2.
  13. wakeupcall

    wakeupcall Well-Known Member

    MICHL, how do you handle the day to day with your difficult child? This is a daily problem for us. If I MAKE him sit and go....he eventually does, but he will still go in his pants sometime during the day. His room reeks despite my diligent daily cleaning. I won't let him go to a sleep over nor have one here any longer. The eighth grade is going on a trip out of town for overnight and he can't go. He doesn't seem the least bit interested in solving this problem (problem? what probelm?). He doesn't see it as an issue at all.
  14. MICHL

    MICHL New Member

    Hi, same here... husband or I sometimes make him sit on toilet and he'll go, sometimes he will do it on his one, but frequently, almost daily he will soil his underwear. He denies it. If he is sitting there and i smell it, or see a stain, he will still aggressively deny it. difficult child does have a sleep over at our house sometimes, and there has been a few occasions where he's soiled. He no longer does this at school or in public. difficult child's main problems at home are this, defiance, and agression. husband and I both can't believe it's still going on, but we are coping. I've taken difficult child to a gastro, pediatrician, counselors. For a long time we did Miralax, and Benefiber, but those also REQUIRE sitting compliance from difficult child.. .which was lacking. difficult child is not interested in "solving" his problem and he doesn't even like to talk about it. He gets very agitated and aggressive when i try to talk to him about it. It's also very very very hard to get him to take a shower, but once he's in it's fine. You can email me anytime you want.... it seems our difficult child's have very similar issues. Michelle