I just noticed this web site and I need other parents who have similar problems as I have. My son is 13 now and still has major problems with the ADHD. I talk to the doctor and feel that all they really know how to do is just prescribe meds. The meds help but I think as parents of ADHD kids we know more than they ever will! I talk to my own parents and friends and they have no clue how to deal with my son's problems. I have been dealing with his ADHD since he was 5 years old and I really thought I knew everything about ADHD. Boy, was I wrong! I am even an RN and thought I knew something about this!! Now at 13 years old I have problems with him having encopresis or stool soiling. I am at my whits end! I think I need the psychiatrist for myself, not him! Any parents out there who have some suggestions? I know he does not have Megacolon or an anatomical problem. I have seen the pediatrician and she says it's just him refusing to go to the bathroom and also a part of ADHD. He started out by having a large bowel movement weekly. And I mean a large bowel movement to the point that he could not flush the toliet. So I tried some Miralax and now he is having problems with bowel movement in his underwear. He says he can not feel it and does not smell it. Everyone else does! Then he denies it and when told to clean up the mess he blames it on the dog or someone else. He will sleep with bowel movement in his underwear, on his bed and in his room. I have tried to be reassuring and tell him that you need to go to the bathroom when I first feel the urge. Do not put it off and we you have an accident, just clean it up. However, this does not seem to be working. Knowing about ADHD, does this seem right to you? This is causing a major problem in my house and my son has to return to school this week. HELP!!!!My son had some issues with encopresis when he was four. He had been constipated, which led to the whole problem. (Too much milk doesn't work for his system.) Anyway, we went through the whole deal of Miralax, stool softeners, etc. but I think it almost made it too soft to where he couldn't get there in time. Eventually, the problem can lead to where they don't feel it, as the body parts get stretched, etc. We decided to back off of the stool softeners and just make him sit on the toilet for about 5 minutes after every meal to try to go. That really helped because things are simulated after eating. This also helped get his body back to where he could feel it again. We also made sure he would try to go before playing video games or anything else where he might hyperfocus and not go to the bathroom. After a few months, this system worked for us and everything has been back to normal for more than a year. BTW, this is a common problem, especially with boys. People just don't like to talk about it because it's so gross and it's hard to understand. I'm sure at 13, he is completely self conscious and losing some self esteem. I wish the best of luck!!! Hang in there!!!
Try a search for encopresis. We have dealt with this and I received some good advice here. Wyatt didn't feel it or smell it either.
We've been there too.Try to see a pediatric gastro-enterologist (sp?).
Pediatricians rarely handle this well.
We combined the medication, improved diet and
timed bathroom "sits" after breakfast and dinner.
Some parents use enemas to clean out the system,
but we were told not to, since it can be traumatic for
kids.
If he is like my son, he really cannot feel it coming,
so it is important to be reassuring. In my opinion, I
would not tell him to clean up the mess if you are
around (unless he wants to), although he should
learn what to do if it happens elsewhere ( we always
packed underwear in a discreet pocket of his
backpack.) I suspect that he is quite upset about this
and that cleaning it up may upset him more - just a
guess, I admit.
Encopresis is rarely caused by psychological
factors, but it can have psychological effects. It is
common for kids to claim that they do not notice the
smell, since they don't know what to do about the
probelm and try to put on a facade that they don't
know/care about what is happening.
Thank you both! That makes alot of since. I am trying to get him to eat better and drink more water. I think the Miralax made his stool too soft and he was not cleaning up properly if you know what I mean! I have an appointment with the GI doctor coming up and I am going to discuss this with him. He has a physical problem going on though. I think he has not been eating correctly and has gotten to the point where he is used to only going once a week. When he had to go more often this caused him to just rush through the whole wipe and flush thing. Then the Miralax made the stool soft and he just wasn't wiping it all off. The miralax was a little too much for Wyattt too. We use Fiber pills. I've been dealing with this for about 5 years. I use Miralax as well. You can increase the amount safely. Mineral oil works for some. I also use Kellogs All-Bran Bran Buds -- nothing else. I soak them with honey dry, and he eats 1/4 cup daily. I've tried other forms of fiber, but nothing else worked, and this is what his doctor recommended. If he is home, he sits on the toliet 20 minutes after each meal for 20-30 minutes. No cheese; cut back on milk. Lots of water helps. His encopresis has really improved. He may go for a few months with nothing, then soil for a week, or soil once a week. He washes out his own underwear by hand and puts them in the washer. Vacations really trigger it. I don't actually know what's going on until I do his laundry.To the other parents dealing with this...which meds are your kids on? Wyatt is off for the summer. We are giving him a probiotic and 4 fiber pills a day. He also sees the chiropractor and as been accident free all summer. I think the meds did it. Any opinions? Shouldn't that be a side effect they tell us about? Don't want t ostart a debate just curious about what you guys think.
I kinda doubt the meds do it. Encopresis started at 4 yo, and meds didn't start until 8 yo.... I think it's an attention issue. Body says "time to go!" Child hears message, and then becomes distracted.
Is lack of focus or distractibility a major symptom for those of you dealing with encopresis?
dianar - forgot to mention flushable wipes. Might help him with the mess, and it is a mess.
We use mineral oil, although we have used Senekotand Lactulose for short periods.
Encopresis is not unique to ADHD. Often a child has
one painful bowel movement and withholds. The
cycle starts.
In our case, it runs in the family and seems to
indicate a genetic gastro-intestinal problem.What may help, also, is to keep wet wipes in the bathroom and perhaps a few individually wrapped ones in his back pack. He can say that they are for cleaning his hands if anyone says anything to him at school but I doubt they will. The wet wipes help with clean up and aren't as rough as toilet tissue.
RE the questions on meds possibly causing it ... our son was not on meds when this problem started (also four years old). Meds haven't really had an effect. For us, it really was the milk/dairy factor that got him constipated and caused it. (I thought he was drinking too much juice, so I said only juice for breakfast, then you can have milk or water if you are thirsty. He drink quite a bit more milk and not much water, which led to our problem. Once constipated, it is hard or painful to go, so they hold it in, then lose the sensation, etc. And once it starts, it can be difficult to get the problem under control and things back on track.) We've been doing well the past year and meds haven't had an effect. :)
our son is 7 years old and has been dealing with this issue for almost 3 years. much like the other kids described, he seems to almost not care which adds to the tension of the overall situation. He can go a month with no problems then turn around and have accidents 3 or 4 times in a week. it def seems like schedules help. if we did not force him to sit down and go i almost think he never would, but even then he usually refuses to sit. or he goes in the bathroom and pretends to try, but really doesn't. it is very frustrating. we have been using mirilax for almost a year now, and that seems to at least prevent the major constipation and painful bowels that started this mess. we are also currently looking into alternate diets to help improve his overall well being.
[QUOTE=dianar]I just noticed this web site and I need other parents who have similar problems as I have. My son is 13 now and still has major problems with the ADHD. I talk to the doctor and feel that all they really know how to do is just prescribe meds. The meds help but I think as parents of ADHD kids we know more than they ever will! I talk to my own parents and friends and they have no clue how to deal with my son's problems. I have been dealing with his ADHD since he was 5 years old and I really thought I knew everything about ADHD. Boy, was I wrong! I am even an RN and thought I knew something about this!! Now at 13 years old I have problems with him having encopresis or stool soiling. I am at my whits end! I think I need the psychiatrist for myself, not him! Any parents out there who have some suggestions? I know he does not have Megacolon or an anatomical problem. I have seen the pediatrician and she says it's just him refusing to go to the bathroom and also a part of ADHD. He started out by having a large bowel movement weekly. And I mean a large bowel movement to the point that he could not flush the toliet. So I tried some Miralax and now he is having problems with bowel movement in his underwear. He says he can not feel it and does not smell it. Everyone else does! Then he denies it and when told to clean up the mess he blames it on the dog or someone else. He will sleep with bowel movement in his underwear, on his bed and in his room. I have tried to be reassuring and tell him that you need to go to the bathroom when I first feel the urge. Do not put it off and we you have an accident, just clean it up. However, this does not seem to be working. Knowing about ADHD, does this seem right to you? This is causing a major problem in my house and my son has to return to school this week. HELP!!!![/QUOTE]
Hi I am brand new here, my son was diagnosed with encopresis about 4 or 5 months ago by his dr, and yesterday we got a diagnosis of ADHD.
He soils himself regularly, we have to do enema's sometimes. I am still learning about all of this myself, but it's good to know that I'm not alone in this experience at least and this is linked with the ADHD.....that is interesting.
Jacob starting having bowel movements on himself about 10 months ago and it happens frequently. The past two weeks it has been at least 8 days in a row---he is 7 years old. The dr said it was caused from chronic constipation and that he cannot feel it. He won't come tell you when he does it either and seems to just not care that he has poop on himself. He gets picked on and made fun of a lot b/c of it.
I can't imagine the 13 year old dealing with it----so embarrassing for them....
Ok, This is a sensitive subbject for me becasue the pain these kids are going through socially with encopresis is horrible. I 100% believe that they do not feel it. I have done ALOT of research on this which included talking to more then one doctor. When the bowel gets too stretched from constipation it just will not work. No action, no feeling. When it gets too full it empties itself without warning. I also believe they do not smell it because they get desensitised. As for denying it, I would too. They are ashamed, embarassed. We did 2 enimas in one day then fiber, fiber, fiber every day. Miralax was too much for Wyatt. I will check the mg when I get home but he takes 4 fiber pills a day. You have to stick with it for months until the bowel heals.
I am also a believer (many are not and that's ok)of chiropractics. We take Wyatt once a week and had him on a probiotic all summer to help his intenstines and bowels become more healthy. I am happy to say he is accident free and proud. As an added note...he is also off meds so that is helping keep the constipation at bay. I realize most kids need their meds.
Yup, Wyatt's mom is right. They cannot feel it, and it takes up to 6 months for the colon to regain it's shape. I'm also betting they cannot smell it, because it's always around! If you've got a problem that you have not control over, why not pretend it isn't happening?Our son claims he does not "know" when he has an accident, but I don't know whether to believe him or not. Take tonight for example. We were at the playground, and he walked up to a tree and pretended to go to the bathroom. I asked if he really needed to go, and he stated no. (He ALWAYS says no.) Then when we got home I realized he had a small accident. I asked when it happened, and he told me at the playground. When I asked why he said he didn't need to go, when he really did, he said it was because he didn't want to leave. ADHD strikes again. He becomes so wrapped up in what he is doing that he ignores/avoids vital things. It makes me so sad for him, because I feel so helpless anymore.My son also suffered from encopresis. In fact he never actually managed to become toilet trained from the word go. At 8 yrs he was diagnosed with ADD. I thought this was just a learning disability and didn't put 2 and 2 together. However, I have since heard of several other cases of children with ADD also having encopresis. My son had this problem until he was well into his teens, together with bed wetting. We went to many doctors and tried medication, training and routines for years and years. He never seemed to feel a bowel movement nor did he smell it, but of course everyone else did. His father punished and belittled him repeatedly which still didn't help - just made him worse really. He had to go away to boarding school because there was no help at the local school for his learning disability. Here he was finally made aware of his problem becausse he didn't have me to help with the cleaning up. Once he HAD to concentrate on the problem he did and within the first two years he managed to contol it with only a problem now and then and usually that was when he was with me. He's now 20 and the problem has completely disappeared.My son (just turned 9 on Wed.) has kind of had this problem. He had the issue of going once a week (or less) and they got so huge we literally couldn't flush them. I took him to the pediatrician and he told us to do Miralax and that it would take 6 months to recover. Well, it was difficult because giving it to him after the first week, would cause him to have small accidents and it wouldn't just affect his underwear, and then school started, so I backed off on the giving of Miralax because it was causing so many accidents and it's embarrassing and he was complaining. I am curious about fiber pills, I may try that.
I have a friend whose kids and herself, have Celiac Sprue disease and she says research shows many people with ADHD have this disease and constipation is one of the signs. Celiac disease causes you to not absorb vitamins and things and basically you are allergic to gluten and wheat. I have not tried the diet on him, but have considered it. I guess there is a blood test too. Just something that is something to consider. I'm curious if anyone has heard of this as a cause.
Update: no milk, cheese or yogurt for one week, plus bran buds daily, and there were 90% LESS soiled underwear in his dirty clothes hamper...Another update: he's now regular, going to the bathroom 2x daily and no soiling in the underwear. He's not eating dairy products but I've eliminated the daily bran buds. Now I'm working on eliminating the Miralax. Gosh, how come his ped never suggested this?
Good for you guys Jessica N!
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