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| jamiesmum....doesn't that just boggle our mind? It's the most frustrating thing. I don't have any suggestions, as my daughter still does it. Although she's 9, and doesn't run around anymore with her pants off, but sometimes when she has a housecoat or pajamas on, she will have no panties on and typically will feel poo much quicker and go to the toilet on her own. How old is your son? |
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| Does anyone have any suggestions for helping with the "No pants on they feel it, pants on they don't feel it". My son is exactly the same. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I'm curious...your husband "had" the problem...how/when did it change for him? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I just found this 'support group'. My daughter is 7 and has had Encopresis for a LONG time! Reading all these posts helps me to see all of the common problems. Constipation when a baby, not admitting when they've had an accident, not wanting to go to the bathroom and my favorite: being able to go when they have a bare bum versus when they have clothes on! I tried crying and telling her it made us sad, I tried yelling at her and spanking and I've done love. (That was all at the beginning!) She now knows the routine and how to clean herself up. It makes sense that most of the time they have accidents in the afternoon...that seems to be the time she has hers, towards the end of school. No one makes fun of her for stinking. I have taken her to specialists and they have done test after test. I even took her to a Cranial Sacral specialist. One thing I found out is that it seems to run in the family. My 16 yr old brother in law has this problem still. My husband had the problem, so did his father and a cousin also did. All you can do is deal with it and love the child even more. One day I pray it will end and that my other children won't have this problem! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Lucy, not sure if you are still out there, I have a 12 y/o boy who has ADHD and encopresis (since forever) he can control it at school and now for 2 weeks cause he wants to go to camp, but he can't at home and other times? he can sit in it and is not worried about cleaning himself up (I just don't get it) Please give me some insight into what is going on with him? how did you feel? could you control it?was it emotional? or only physical? i want to help him it makes us both really sad thanks |
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| Sounds like there is something physically wrong. I'm from Canada so I don't know any physicians in the US but I'd keep looking for the right medical support that you need. What have you been doing for treatment so far? My daughter is 9 now, and she was diagnosed with enco at age 4. If you have any questions let me know. Although she still has occasional accidents, I can say there has been much improvement. I do believe that she has slow motility and lack of feeling to go poo, but without further physical testing (or a trip to Austrailia), we won't know for sure. In the meantime we just continue to keep doing what has been working for us and slowly see the improvements happen. Hang in there! |
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| Our daughter is now 6 years old and has been withholding since she was about 2 months old. I've read the information about slow transit constipation and the nuclear transit study. I've even listed to Prof John Hutson's podcast lecture on this issue. Do you know of any institutions or physicians in the US that are familiar with this. I've been checking with pedicatric GI and neurologists but I've gotten no where. Plus my pediatrician has never heard the term either. Any help would be great! I'm at my wits end and I'm even considering a trip to Australia. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, My name is Julie, my son is 10 years old and has always had toileting issues.I have just heard about encopresis today and would like to know if any of the kids talked about here are autistic as my son is.I too have had the run around and even called myself a bad parent for not being able to find the answer.I have tried all sorts of programmes but as soon as he has to take responsibility himself he cant(or wont i dont know).I feel lousy for not believing he couldnt control this.I have now been told to try movicol, has anyone used this and does it work?I am at my wits end money wise and ideas wise as well. Thanks |
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| Hi Everyone, I have just found this board today. We have been dealing with this for 18 months now in my son who is 6 years old. He previously had no problems with toileting. We live just outside of Sydney and I was wondering whether anyone had a good recommendation for a paed/clinic etc in Sydney? Our GP and the paed he referred us to have not been helpful thus far. Thanks |
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| My 8 year old stepdaughter is doing a great job! I was worried about her going to school and having accidents! She did have an accident the first day and now since we talked to her teacher and told her the situation she is allowed to use the bathroom when she needs to. Thank goodness! I try to give her the best encouragement I know how. Hi-fives are a big thing to her so we give them alot when she has made the right choices! Giving positive praise is really working for us right now! We are hopeful that she will continue to make the right choices! Still doing the Miralax everyday that she is at home with us. When she goes to her real Moms every other weekend she doesnt take it only because her real mother doesnt believe she has a problem. Which is only because my stepdaughter doesnt tell her when she has an accident and just puts the soiled panties in the clothes washer and doesnt even clean them out. I have a real issue with her mother not acknowledging her problem. It doesnt benefit my stepdaughter in any way especially when she does stay clean my stepdaughter doesnt receive the praise for doing a good job from her Mother. I know I shouldnt worry about the things I have no control over, but I am feeling tons better since the last post I wrote! Reading all of these experiences has really helped me cope and given me hope that one day we well overcome this and live the happiest lives we can! Stay strong everyone!!! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I've been feeling somewhat frustrated lately with my daughter and her not wanting to take more responsibility to clean herself up when she has an accident. She too will act like it didn't happen and continue to play as if nothing is wrong (wet/soiled pants and all)...even after it has been pointed out to her that she's had an accident. I believe she is embarrassed but her way of coping is to ignore it. I decided to go back and read some earlier posts for ideas and suggestions The second post on this forum, dated April 2007, gave me hope, as it sounds very much like my daughter who is currently 9 years old...that eventually she'll make the decision to at least take responsibility for her accidents on her own. I can only hope and pray... |
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| labs2cats3: I'm curious..do you think that your son's success over the past month is related at all to his motivation? Was he sitting on the toilet regularly prior to his last consult? You say that he has had a bowel movement every day but has there been any soiling in the past month? I too believe that soiling is a physical problem, but I'm also trying to understand my daughter's behavior in relation to her soiling. I wonder if she was more motivated to acknowledge her soiling and address it more consistently as a problem if her condition would improve. My daughter is 9 yr. old and I'm at the point where I'm contimplating further physical testing. Up to this point she's had no physical testing done to see if there is something wrong. She's had xrays to determine if she was constipated and she's had cleanouts, but that's it. |
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| cory1965: I just read your post and truly empathize with you. My son has suffered from encopresis since preschool...he is now 10. I have faced the same lack of understanding. We finally were referred to a pediatric gastroenterologist 1.5 years ago. He has been through many tests and two clean outs in the OR. We were still having no success and soiling everyday and he didn't seem to notice. It was very frustrating and people who have not been through it have a difficult time understanding. At our last visit to the specialist, he suggested a MACE ( a surgical procedure which brings the appendix up to the belly button, it then becomes a "port" for a "top down enema" done through the navel). Since that consultation, he became truly motivated. He REALLY wanted to avoid another surgical procedure. He continues to take Miralax twice a day and sits after breakfast and supper. He has had a bowel movement everyday for over a month now. This is a huge success for us. I wasn't sure we aould ever get here. I know that we are not out of the woods yet, but I am hopeful. As for what to say to family members, I believe that education is best. Maybe you could suggest they log on and read some of the experiences that many families have had with encopresis and that it is NOT a situation where the child is lazy or acting out...that it is actually a physical problem. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter, 4 yrs, is in daycare. Her peers r starting to call her stinky. How do u deal with that? What do u say to family members who don't understand and critisize? My nerves can't take it. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Ireadlables, what was your experiences before your children were diagnosed? I don't know how to get help from dr.s or psycologist. My pediatrician doesn't seem to understand the magnatude of our problem | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Just a follow up on the interferential machine. We did the flush out a few weeks ago and then started using the machine again and we're back to no soiling at all!! Yay! Will be interesting to see how long the machine is effective for this time before needing to flush. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I looked up the drugs you mentioned and for 2 of them the side effects are constipation. You need to discuss this with your GP. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 7 yr old son has been having encopresis issues since Jan. when he went on a medicine that caused him diareah. Then he started making a mess in the bathroom and on the rugs and in his pants. I found it smeared on the carpets and floor registers. I took him to a psychologist who had me do a stool diary and chart. I gave him mirolax one weekend and he had a big clean out that was such a runny mess. For a few weeks he did better. Now he is back to smearing his carpet and on his register. It is making such a mess. He has gone 6 times today. It falls out when he is playing. At first I thought it was the Omnicef he was on but I stopped it and the behaviors have remained. What can we do? Should we give the meds he is on Abilify, Celexa and Clonidine, and steroids? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| That makes sense...about the Knickers around the tummy disrupting the sensation... In my daughter's case, I keep thinking that the soiling is somewhat behavioral as well. It "fits" with my daughter's personality. In many ways she is still very child-like in that she just doesn't want to stop doing what she's doing to go to the toilet. She has very typical attention deficite behaviors in other areas, so I keep thinking that's why she consciously doesn't feel the sensation....she's so focused on the one thing in front of her, and she's feeling over stimulated with everything around her. I don't doubt that it's also a physical ailment in that her nerves are damaged. Her intestine has been stretched so many times... I've always believed that in my daughter's case, the underlying cause is her "holding her stools"...which causes the nerve damage. Whereas, I know you have stated in your previous postings that in your childrens case the underlying problem is "the damaged nerves". I think that what makes encopresis so complicated is that there isn't one answer. |
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| My daughter does exactly the same! No knickers and she goes to the toilet and my son did it too when he was still soiling. She went back to being like that when she started soiling again recently but after the flush out again and the machine she's now doing it all in the toilet. Because STC is a nerve disorder perhaps the feeling of the knickers around the tummy etc disrupts the sensation further? The xrays involved are different to normal ones. Yes, they have multiple scans over several days but the dosage is lower so adds up to two normal xrays. Also STC and Neuronal Intestinal Dysplacia are the same thing it's just the common name and the medical terminology. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks, that helps. I honestly don't know if that testing is possible in Canada. I'm learly about the transit study testing because of the xrays my daughter would need to have. In my daughter's case, I'm not entirely convinced yet that the soiling is due completely to a physical cause. such as STC. In my daughter's case, a part of me believes that she holds it. Ever since my daughter was 3, during the potty training, she would always go to the toilet when she had no pants on...hence at age 3 and 4 I could let her run around with no pants on. She always felt it when her bum was completely bare. Of course now at age 9 she doesn't run around with no panties on...however, last night she went to the toilet and had a small bit of poo on her pants and since it was almost her bed time, I told her just to keep her pants off as her shirt covered her bare bum. Shortly after she went running to the toilet and had a bowel movement. Now...when she has her pants on she says she doesn't feel anything, BUT when she has no pants on she says she totally feels it. Figure that one out!!?? That's the way it's been since she was 3-4. No pants on she feels it, pants on she doesn't feel it. The good news for us now is that my daughter is coming forth more consistently to say she's had an accident, so that gives me hope. And when I read the post that her son out grew it...I hang on to that. Gotta go for now, Talk soon |
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| The machine is the only treatment. My son now doesn't use the machine at all. My daughter had recently started soiling again so I contacted the Professor. He said to do a flush out again (1st time since April) then to start using the machine again. The machine (interferential)should work again for a longer period of months before she needs to be flushed out again, start using the machine again which will work for a further longer period and so on. So... we have done the flush out, started the machine again and she is back to going to the toilet. The only other thing we are doing is a LOW fibre diet. This is all new research done by the Professor. Doctors in the USA probably haven't heard of it. The machine stimulates the bowel to keep moving the stool along. She wears it - 4 sticky pads on her stomach and back connected to a small camera size unit for 30 mins each night. Last night she only had it on for 5 mins before going straight to the toilet. She too has all the denial of soiling etc that all the other kids have. I think they do know it has happened but they deny it or don't own up to it, they just hope it will go away or no-one will notice. The machine is called "Ultima IF 4160". Similar to a "tens" unit if anyone used one during labour or for back pain but has 4 pads instead of two. Bowel needs to be flushed out before 1st use. Need to have the "nuclear transit study" to diagnose slow transit constipation before going down this path. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ireadlabels.....I'm still not clear on what the specific treatment is if your child is diagnosed with either of these conditions? I know you mentioned that your children are on a machine everyday. Is there anything else? How are your children doing? |
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| Hi everyone, please research "slow transit constipation" and "neuronal intestinal dysplasia". Also listen to a podcast by Prof John Hutson, search for: "constipation, no longer stuck" | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| soxsoxy, thanks for the insight. i never thought about talking to my son. my neice hasn't been examined by a dr. Only one time they felt to see if she was impacted. How do I get their attention that this is a problem and not just potty training issues? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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