Leslie—I see that you have ordered Clean Kid Manual (CKM-IV).  It is on the way to you.  Also, I have already entered you onto the exclusive Soiling Solutions Parents’ Forum where you will love the 300 or so parents who are or have been on the same treatment protocol. They are very supportive and insightful.  I am assuming that your encopresis specialist is a Pediatric Gastroenterologist (PedGI) which is the top medical specialty that addresses encopresis or functional fecal retention.  It is very unusual to see a young child on such a complex oral medical “cocktail.”  That could well be contributing to all of the gurgling and distension that you are observing.  Your note that the specialist is using “…the runny stool method to retrain the child that stooling doesn’t hurt.” may be narrowly accurate.  I am sure he is hoping that removing the pain will somehow magically allow the child to begin sitting on the toilet and start up his voiding reflex.  Not so, not a chance, I am the learning theorist here, actually he is training failure!  The voiding reflex arc requires a voiding urge signal going up to the brain which then messages back to the anal sphincter mechanism to “release” the prepotent more automatic holding reflex.  By assuring “runny stool” he is sabotaging a discrete, timely stimulus to the brain and an inability to hold until the voiding reflex is learned and established while sitting on the toilet stool.  The child won’t be able to control leaking and gassy expulsions because the urge stimuli are so intermittently confusing and mixed in the “top down” approach.  No wonder your child is “…always grumpy and always nervous about his poop.” The subcutaneous membrane at the end of the colon cannot distinguish between gas and liquid stool.  You need a normal solid stool at the end of the colon to send clear, discrete urge stimuli up to the continence center.  The Soiling Solutions (SS) protocol was the first and to this day the only available encopresis treatment manual available to the general public that can be done in the home using generally safe over the counter agents.  Yes, it features a more aggressive approach to encopresis using timely brief sits, suppositories, and enemas on a carefully worked out schedule as required for a daily treatment hour. Think of it, using a suppository or enema primer will almost immediately create powerful discrete voiding urge signals shortly followed by a very difficult to resist voiding response. That empties him out sufficiently in most cases so that he will be continent for the following 23 hour period when you redo the SS treatment hour.  Do this repeatedly and you will have successful toileting learning trials making the stimulus-reflex connection every day!  So simple!  Most children will stop having accidents within two weeks, though the protocol may have to be continued for a longer period for the conditioning to become truly reliable.  Relapses can occur, but they are much less likely with this protocol and you can always reapply the SS treatment and the children know this and will trust it and you.

I suggest that you should at least be monitored by a local physician as you proceed for any medical concerns that may come up.  Sadly, many parents have come to distrust and lose faith in their doctors on this issue and proceed without consulting them.   A physician should be at least be “open” to your trial of the SS protocol and be supportive of your efforts.  Many can learn from you parents.  I will attach a report of my recent medical journal article on SS and editorials concerning it in a separate email to you.  Frankly, it may take 20-30 years for my protocol to more effectively become adopted into general medical practice.  Most cultures are very inhibited in talking about this very private area of the body and dealing with a highly offensive body product.

Karen—Your dilemma is not restricted to Toronto, it is literally world-wide.  The most common onset of encopresis everywhere is associated with toilet training.  It truly is absolute misery for all concerned because we are dealing with a private area of the body and an extremely offensive body waste product which is quite literally a biohazard.  If you keep reading on in this column you will learn that your son has overlearned the prepotent holding response which all of us engage when we get voiding urges or signals.  It is our immediate, top level response!  He has had some promising periods of adequately following up with the voiding reflex to stay clean, but this has never become sufficiently reliable.  Wouldn’t it be terrible if he is erring on the side of holding because of Dad’s not buying into his not being in control?  He could be over trying, and once holding gets started for any reason (and that may not be dad’s fault) he truly does not have control.  Perhaps he is a very busy child and hates to be interrupted to brush his teeth, wash his hands, or go to the bathroom.  We just do not know, the consequences are often way much greater than the often completely innocent initiating cause(s).  Lactulose is simply a sugar-based hypermolar agent which draws fluids from the surrounding tissues into the colon to keep the stools soft.  It was probably the most popular stool softener until Miralax came along.  Virtually 99% of docs are stuck on the top down softening route to assure that the stool moves along and that the child does not get backed up and get a blockage that might require hospitalization and medical evacuation of his colon.  Basically, you are on “maintenance therapy” and assurances of “He will grow out of it.” However this has worn thin for you both and you have been extraordinarily patient and hopeful.  No child or family should go beyond a sixth year without a truly effective bowel retraining protocol.  There are psychological and physical consequences of not being more aggressive when that becomes necessary.  That is why I wrote the Clean Kid Manual some 11 years ago.  It is only available from my website at www.soilingsolutions.com or a few professionals out there who purchase them in discounted lots for use with their patients.  You will have access to the SS Parents’ forum with a purchase from my website store where you will find 300 or so parents from around the world who have already successfully used the manual or are currently using it.  I will attach a copy of my medical journal article on the Soiling Solutions protocol along with editorials concerning it in a separate email.  I will also attach a photo of my toilet trained cat.  Check out www.soilingsolutions.com/megacolon.htm where I forcefully and in great detail address the issue of encopresis or functional fecal retention.

Beverly—You are asking for a referral to a Pediatric Gastoenterologist (PedGI) in the Hartford area for your grandson who will be entering high school in September.  I keep a list of possible referral sources at www.encopresis.com, but have trouble getting additional referrals on to that website.  Nothing is listed for the Hartford area.  Any readers here are welcome to suggest resources that I can add to the encopresis.com site so that I can update it.  Sadly the presence of two divorced parents on different pages do not predict well for a positive outcome.  The stress of encopresis may even have contributed to a divorce.  Getting the parents on the same page might be helped by a manual that they could share or have separate copies to follow.  There were no published detailed manuals for parents in treating encopresis until I prepared the Clean Kid Manual (CKM) in 1998 and started up www.soilingsolutions.com.  The parents cannot expect magic from the current practices of the PedGI community.  The docs are pretty stuck on “maintenance therapy” and uselessly repeating,  “He will grow out of it.”  They offer no real solutions.  There is no relevant surgery or medication.  A more aggressive approach in a home-based program is necessary.  The parents will have to do the scut work themselves in their respective homes or give one parent the permission to do the major intervention in one household.  The child’s age is also an issue because he will have to be cooperative and have to do the self-administration of suppositories and enemas that the SS program requires.  He may be ready for a solution and the specific, definitive steps in the CKM may offer him hope after years of failure.  The parents are going to have to come to terms with an agreement that is in the best interest of their child.  Consistency and mutual parental support is absolutely critical, this is no time for sabotage or undercutting the other.  The presence and support of the parents on the SS Parents’ forum will also be critical.  Grandma Beverly may have a special role to play with encouraging her grandson to comply with the SS protocol.  Many of the SS parents have children of his age who are very happy at having halted soiling issues within 2 weeks if there is complete compliance with the protocol.  All of the adults and the child should read the manual(s).  Sorry to be so “bottom-line” and brusque, but we are talking of your grandson’s future here.  I will send you an attachment of my medical journal article and editorials about it which will take 20 or so years to permeate into general medical practice.  Keep reading the Q & A below and you will gain further insight.

Michelle—How so very sad, that is quite a box that you two find yourself in with little means to climb out of it.  But, there is a way.  You would be so encouraged by the moms on the Soiling Solutions (SS) parents’ forum who support and advise one another using the Clean Kid Manual (CKM).  There are many children your daughter’s age and even older who finally gathered themselves together to take on the encopresis monster.  Your daughter sounds like a remarkable person who is forging ahead even with this problem.  Think of what she could do without this monster on her back!  Her attitude would very likely improve.  You will have to be very courageous and determined to proceed.  Your daughter will have to be very courageous and determined as well.  Right now she has intimidated you and needs to be confronted with structured advice and a protocol which will have her soil free inside of 2 weeks.  She has had advice that has never worked before doing the same old same old!  This should have been addressed aggressively and with certainty some time ago.  The docs have emphasized “maintenance therapy” with stool softeners like Miralax or Lactulose and when that did not work they added, “There, there now, she will grow out of it”.  Yeah, right!  Your daughter has given up on gaining control for good reason, it has never worked!  Why try?  Reminders only make her feel like a failure, and being who she is, she is absolutely going to reject that.  Everyone feels like a failure on this particular issue.  She needs hope, a strong mama bear, and a protocol that works.  Keep reading the questions and answers below and go to www.soilingsolutions.com for more information.  You and hopefully she will be encouraged and be able to climb out of that box.  Your relationship will be vastly improved if you can follow through with the SS protocol and gain a grateful daughter.  There is no other alternative out there that can be done in the home.  Remember those other moms out there who have done this and wish to help you.  I will send you a copy of my recent medical journal article and editorials regarding it.

Debra—The birth of his baby sister could have been an initiating cause.  It does not take much to trigger the holding response.  It is just that once it gets started it may become firmly established and resistant to change. The holding response is our initial and predominate response to bowel urges.  This is normally followed by going to the bathroom and initiating the voiding response.  The response of the doctors is very disappointing, but very typical.  The medical profession’s initial response is to make sure that the stool is softened and moved along the colon.  An obstruction could result without such aids and result in a harsh clean out or even hospitalization.   After a time they can only encourage you to continue “maintenance therapy” and assure you that he will grow out of it.  They resist or don’t know about a more aggressive approach which should have been initiated by the time your child was 6 years of age.  I really can’t criticize them.  They are very busy, hardworking professionals and my writing is not well known. I basically developed that more aggressive approach and it has been published in a medical textbook and in a medical journal article of which many would not be aware.  I will attach the article for your information.  My basic protocol was first published as a manual in 1998 and was the first manual to ever have been published for any approach to encopresis.  It is resisted in general by the culture and the medical profession because it does rely on suppositories and enemas, at least initially, to prime the voiding response until it becomes more reliable and the child’s body and brain take it over.  This is a case of learning by actually doing successful voiding following an increase in awareness of his voiding urges.  Your grandson cannot help what he is doing and denial is a natural reaction. There is no other really reliable option available to you that can be done in the home.  If you order the Clean Kid Manual you will also have access to other parents who are using it and who will be happy to assure and guide you.  Do not try to guess my protocol on your own or from the medical journal article.  Timing, support from the parents, materials, procedures, and explanations are all important.

Christy—Yes, it is very difficult to adjust Miralax to a point where you don’t have constipation with hardened stools or go to the opposite extreme of “…runny poop all the time.”  Your solution of going over 3 days without pooping is not desirable and will inevitably wind up with an enlarged and weaker colon causing potential physical problems later on.  You may see more irritability and oppositional behavior as he “fills up”.  The occasional accidents, even just once a month for 3 consecutive months still meets the definition of encopresis.  The regressions that you observe when you have a change in his environment are not unusual.  Our daily BMs typically become a “habit” as to the place and time of day, maybe with the assist of eating or coffee which can “prime” our holding-voiding reflex sequence.  Observe yourself or your husband if you take a trip, go camping, or go through a busy, stressful period and see if your voiding becomes delayed until normal stooling reasserts itself.  You could give your child an enema following two full days of holding as a stopgap measure to prevent excessive backing up.  But, if you do that, you may as well follow a more rational training program such as that set forth in the Clean Kid Manual-IV (CKM-IV) and join with other parents using it or have used it successfully and remain on the Soiling Solutions (SS) forum.  Access to that forum is free upon ordering the CKM-IV and it is exclusive to keep treatment issues more focused based on the manual.  Read on below for more insights.  Thanks for your questions.  My email reply to you was rejected, so please write to me again if you wish a copy of my medical journal article and a couple of editorials regarding it. 

Jennifer—The central definition of encopresis is behavioral, not “medical.” Often much effort and expense is expended in “ruling out” physical causes leaving 90-95 per cent of children with the essential problem remaining.  This is why it is termed a “functional disorder.” This often frustrates parents and doctors, who want a clear cut physical cause.  However, physical factors do come into play.  Encopresis is simply defined as soiling once a month in inappropriate places after age 4 years.  So if she still has fecal accidents you have encopresis.   Yes, the “holding it in” issue can start for almost any reason, but pain is often a major factor as our muscles tend to contract in response to pain and psychologically we avoid pain.  Once the holding response becomes “over activated” or “over conditioned” to voiding signals it just becomes automatic and less subject to willful control.  An enlarged colon or mega colon then results which results in physical inefficiency for pushing the foodstuff along.  The holding response simply will not give way to the voiding response which should follow.  Hence, your insight about a “wicked cycle” is right on target.  Add Miralax, a very popular stool softener intended to make stool passage easier, and you add a much greater likelihood of accidents because the stool becomes too soft and “liquidy” and harder to recognize by the body.  Normal hot dog like stools are much more easily detected at the end of the colon, but now you have the problem of the “over holding” predominating again.  There is no way around it, the actual voiding response has to be retrained to become more dominant and assert itself over the holding response.  Your doctor is assuming, like the vast majority of them do, that the voiding reflex will have a fresh automatic “restart” and take over again.  I hope he is right, but that may be only 40-60 per cent of the time at best.  Allergies and diet factors come into play in only 5 per cent of the cases of encopresis.  I encounter a lot of parents going into elimination diets, adding certain foods, etc. in hopes of “magic” happening.  My Soiling Solutions (SS) protocol set forth in the Clean Kid Manual (CKM) has received international attention, but it is still very strongly resisted because it involves the use of suppositories and enemas in a carefully stepped fashion designed to foster the child’s own cues and the appropriate coordinated holding and voiding responses to take over.  I wish you the best of luck, but definitely do not ever let this problem persist to 6 years of age.  Many parents can’t stand it going on for that long, but too many do out of fear and their own inhibitions about dealing definitively with this area of the body.  If you continue reading you will see horror stories about how very ordinary parents get trapped.  Do not buy into a physician’s assurance that your child “will grow out of it.”  Take control of this issue, your child may resist strenuously, but she will be grateful that you are truly parenting and acting in her best interests. 

Shannon—I do not see that you have anything to lose by confronting your boyfriend, but do so with the information provided below in this Q & A column and at the www.soilingsolutions.com website.  The 13 y/o could benefit from the same information.  Your story is so dramatic and an object lesson that this problem cannot be ignored over time and should have been dealt with by the time this child was 6 y/o.  The dad and the boy have become desensitized to the smells and mess.  You as an outsider coming into this situation and mostly doing the laundry could not ignore it.  The love and concern that you and your daughter display has been remarkable, but is being corroded away by repeated exposure and a sense of futility over changing the guys downplaying of this problem.  It may be that they have also felt futility over the years.  I hate to see wasted lives coming from this.  Strong resolve and action is necessary.  Insisting that both guys read the Q & A below and order the Clean Kid Manual (CKM) is well in order.  My program is aggressive because of the use of suppositories and enemas.  It is generally written for younger children.  It will have to be adapted for an older child, but the child himself, because of his age, will have to do a lot of self-administration with insistence and supervision by the father.  A flat plate abdominal X-ray will likely confirm a packed and enlarged colon from so many years of holding.  He most likely will require a “clean out” under the orders of a physician, from both the top-down and bottom-up over the course of 3-5 days before going to the SS protocol after a day or two of rest.  Often the parents on the SS Parent’s forum will share their clean out information.  Access to this forum can only come with the purchase of the CKM.  Diet changes, stool softeners, lectures, pleadings all are fruitless and the father and son must go to a more aggressive format.  I have already sent you a copy of my recent medical journal article and editorials about SS and hope that it was helpful to know that there is hope.  I have seen older children hear excerpts from portions of the CKM and become hopeful and take action, but they always require the strength of the adults to follow through.  Please come back to me back channel and let me know how things turn out.  DrC.

Hi Toni from out West.  There is nothing unusual about what you are doing in compliance with what is the standard medical advice for encopresis.  This is pretty much what physicians describe as “maintenance therapy” in hope of his eventually gaining control on his own over time.  The Miralax is used as a stool softener with the idea that it will prevent the stool from becoming dried out and “stuck”.  The Exlax is an irritant vegetable laxative which stimulates contractions in the colon intended to move the foodstuff along.  It makes some kind of simple Mr. Plumber sense and it does work for 40-60 percent of children.  The doctors may persist in this approach for way too long as they have in your case.  They have failed to address the real issue which is the voiding reflex at the end of the colon which has become dominated by the holding reflex.  We all hold, but do it just until we get to the bathroom, sit, and go.  Sounds simple, but your child just can’t initiate the voiding response at will and so he has repeated accidents when the poo just sneaks by.  In fact,  there is a book entitled “Sneaky Poo.” Playing around with diet is extremely common, but it all is buying time and hoping for magic in the majority of cases.  The waxing and waning of accidents is fairly common because he has not established a reliable voiding reflex habit.  If you keep reading on in my responses to parents below you will learn how my Soiling Solution protocol works to address this issue.  Basically it retrains awareness and associates the voiding reflex with sitting on the toilet stool.  If is definitive and effective, but resisted because it uses suppositories and enemas as training "primers" in a carefully structured way designed to have the child's own natural urges and voiding reflex to take over.  For now I will enclose a copy of my medical journal article and editorials concerning it in a separate email to you.  Readers who want this may simply write in with a request for the article and I will send it to them as an attachment.

K—Bladder and bowel incontinence tend  to occur together because the bladder and colon are close together in the body, the fullness or pressure cues going to the brain get confused, and the voiding response mechanisms are neurologically connected.  Your son is holding poo as indicated by the huge BM.  Many kids hold both pee and poo at school because of the public nature of the lavatories.  You are now dealing with a habit which is perpetuating the hold and accident cycle for both pee and poo. The appearance of this at an older age is unusual and may have led your PCP to speculate about seizures and hence his referral to a neurologist.  Your child may have been predisposed to encopresis if he has had a history of toilet clogging or several days between BMs?  The X-ray may disclose a considerable back up of stool and an enlarged colon.  Your son may be hiding his accidents.  Finding a stash of dried out soiled underpants is not unusual.  There is so much social inhibition and isolation about this area of the body that this hiding and out and out denial are not unusual.  The neurologist’s attitude reflects our social attitudes and overcame her objective clinical training.  People do not understand this problem in general and engage in all kinds of assumptions which can include assuming willfulness and bad parenting.  He has lost control over the coordination of his holding and voiding reflexes.  When in doubt he clamps up, but that becomes overconditioned and out of his control.  In sleep, the voiding reflex may dominate as the External Anal Sphincter relaxes and he has a BM.  This is much more common with the urethral sphincter for bedwetters.  The coordination of his holding and voiding reflexes with awareness of his voiding urges have to be retrained which is addressed by my Soiling Solutions protocol which you will understand better by reading on in this column.  Also, I will attach a recent copy of my medical journal article on Soiling Solutions along with a couple of editorials concerning it.  DrC.

Jennifer—Your experience as a Doula is so very relevant to this issue of stool hoarding!  There are so many parallels physiologically and psychologically to the birthing process which can be helpful, but hard to talk about.  You appear to have avoided encopresis which is simply defined behaviorally as having BMs in inappropriate places at age 4 years and later.  You are doing so many things right with diet, drinking, and the occasional use of a glycerin “primer” to aid her.  You are right about the risk for encopresis being associated with going to public school, it is the second most frequent correlate for its onset.  Your observation on the effect of holding on her emotions and disposition is often missed by parents because they assume it is due to the encopresis itself.  No, it is the discomfort and effort of holding with a fear of an accident is very taxing and often makes them cross.  The Soiling Solutions protocol would fit your child’s situation very well.  She is trapped in a constant cycle of holding and toileting avoidance even as she has escaped the encopresis itself because of your dedication.  You have been doing good prevention, but it is all premised on your efforts which she should take over now and make it over into a natural function under her control.  You have been patient enough!  I will attach a copy of my medical journal article and editorials concerning it in a separate email to you to help you in your making a decision.

Jimmy—Your country extension indicates that you are from South Africa.  Neither of your issues should prevent your being successful with the Soiling Solutions Protocol to eliminate soiling early on with the carefully timed use of short sits escalating to suppositories and enemas as they may be required.  This should lead to your son to taking over his own inherent voiding reflex even though implementation and response may be slower because of his ADHD.  Rather than going into any extensive detail here, please read on and you will gain a better idea about the SS protocol and the theory behind its success.  Also, I will attach in a separate email my recent medical journal article on the history and rationale for the SS Protocol. 

Terri—You will have noticed young children in homes with diapers or pull ups stop, squat, and poop.  This is very natural; especially where children are kept in pull ups for too long or they have a temperament that makes training very difficult. Home circumstances may also have prevented effective and timelier training.  Basically, this has become so engrained via the simple classical conditioning paradigm that ordinary methods of training can no longer apply.  By default this child became “overtrained” to go in his clothing.  It is a habit like overeating, biting nails, etc. which can be surprisingly resistant to change. The wearing of clothes coupled with powerful voiding urges which he has been holding off makes this his ultimate default action followed by the powerful reinforcement of dramatic sensations of relief.  We do not call it “relieving ourselves” for nothing when we have to “go”! 

The only effective default procedure available today is the Soiling Solutions protocol which I developed during a Sabbatical year in Australia and then used it in my private practice.  I have reported on it in a medical textbook and a recent medical journal article, but it remains very controversial because it employs suppositories and enemas as “primers” to induce powerful urges and then repeated successful voiding on a toilet stool in a carefully timed and programmed way set forth in the detailed Clean Kid Manual-IV (CKM-IV).  Eventually, the child’s own resources are conditioned to take over and he is successfully going properly on his own! 

The CKM-IV is available only from the SS website at www.soilingsolutions.com or a health professional who has ordered multiple copies at a significant discount.  This helps to assure proper usage and supervision. The application of the program is really by necessity limited to the privacy of the home by caring parents.  Anything you try in your school setting will be ineffective.  The choice has to be made by the parents.  They will have to follow the SS protocol or allow possible physical consequences (e.g., a megacolon, recurrent infections, irritation, rashes), social isolation, or, pardon my bluntness, have the child soil for years and years with all the attendant guilt, anger, upset, and ego destroying features of encopresis!  The parents will have the advantage of being enrolled in a SS Parents’ forum with other parents who have all read the manual and who have used it with their own children.  Your parents will need parents with “street cred” who have been there with this problem!  My protocol is not “child abuse”, not employing it and blithe assurances that he will “grow out of it” is unacceptable.  I will enclose a copy of my medical journal article, editorials regarding it, and a picture of my toilet trained cat in a separate email to you.  Readers can also see my cat on the stool at www.soilingsolutions.com/megacolon.htm. 

M.—Actually, we likely all hold while watching TV!  You may have heard that the city water pressure drops during commercials throughout the Super Bowl game!  Often people doing errands hold off going to the bathroom until they get back to the comfort of their own homes.  Children often do this during the school day.  Holding is a prepotent, first automatic response to pee or poo toileting urges!  The trouble with children is that they do this so often just as a matter of course that their stools may dry out, their colon expands, and a painful passage of poo may deliver the message to them that, that is enough of that!  Power struggles may result and everyone learns to live with a bad smell and ineffectual efforts to stem the tide of poo.  This prepotent habit becomes so overlearned that it dominates and the follow up voiding reflex habit of going poo on the toilet never adequately develops.  The medical profession instructs parents to give oral stool softeners and laxatives which may work if done early enough, but often this is too late because of parenting delays, embarrassment, and scheduling difficulties with the appropriate specialist, the Pediatric Gastroenterologist (PedGI).  Too many physicians, even including the PedGIs, fail to understand the reflex arc mechanism for installing the voiding reflex to follow the holding response. 

My Soiling Solutions (SS) Protocol is the only home-based treatment alternative that can provide the understanding and instructions provided in the Clean Kid Manual (CKM) to help your child recognize his urges and quickly and efficiently get to the toilet stool and void appropriately.  The CKM is only available through www.soilingsolutions.com or your physician who may have ordered multiple copies of the manual at steep discounts from my store.  Professional orders have been rare since the doc’s simply stick with their old “top down” treatment, sometimes with behavioral psychology emphases for rewards.  They also may offer their profound assurances that he/she will “grow out of it”!  Of course they charge for this profound assurance.  You also pay for laundry, labor, and wasted emotions.  Some physicians are “open” to the SS method and others will give you the “evil eye” or at least frown if you mention it to them.  You can do the SS Protocol with the help of over 300 parents on the exclusive SS Parents Forum which you gain access to with the purchase of the CKM.  I do prefer that you at least let your physician that you are proceeding with SS, but can understand if you do not.  You may have to be very confident and strong in doing this.  I do provide a letter in the manual or on my website to assist you. 

Back in the early 70’s physicians and hospitals had to be confronted to allow fathers in labor and delivery rooms.  They could not fight off the cultural changes pushing this in those days.  I know, I was the founding President for Educated Childbirth, Inc. in Grand Rapids, MI back in those days.  I hope we can get enough momentum to get them to default to the rational Soiling Solutions protocol much more quickly than is done today. 

Lisa—I love the Briticisms of mum and pooh!  Yes, this is indeed encopresis which is really a behavioral definition of BMs in inappropriate places, e.g., clothing, bed, etc.  Since fecal incontinence is so malodorous and a biohazard for the child and others it is not surprising that you are at the end of your tether!  You noted a concern for his physical health related to his colon which becomes enlarged with the reflexive overholding reflex.  This is a real issue and his colon may take a long time to return to normal, if it ever does, but his age suggests that you may be catching this problem early enough.  Lest I create panic for other parents, the colon may continue to be functional even if caught much later in the teen years, but why continue to live with it and take a risk?  Also, why should you expose yourself and your child to more visits to an Accident and Emergency (A & E) Center? Adequate treatment should no longer be delayed even for your young child and frankly it requires a more aggressive approach which today only exists as a home-based treatment based on my Soiling Solutions (SS) Protocol which is explained and detailed in the Clean Kid Manual (CKM).  You will have more of a sense of that protocol by reading more of my answers below by others, including your countrymen, and by going to the www.soilingsolutions.com website.  The CKM and the exclusive SS email forum participation which comes with its purchase is only available from the SS website (or loaned by your health service if they can be persuaded to purchase it at steeply discounted prices—see the Professional option at the SS store).  I will send you an attachment of my recent medical journal article on SS in a separate email. 

My protocol is not widely accepted as a default treatment to the approaches which you have already attempted, ad nauseum.  In fact, the physicians are “stuck” and just repeat instructions for their top-down oral approach, pat you on the head paternalistically or maternally, and assure you that he will “grow out of it”.  That is it, except maybe for biofeedback which requires specialized equipment and personnel outside of the home.  Even though your child appears to be compliant with demands to sit and pooh, that clearly is inadequate and he needs to recognize and respond with a voiding habit which can become more reliable, complete, and connected to sitting on the toilet in an efficient manner.  My protocol only requires 2-3 minute sitting trials.  This certainly is more likely to become automatic than asking a child to wash their hands or brush their teeth.  However, many children may have to be reminded and closely observed for months after success with the SS protocol to firmly engrain the voiding reflex. 

Marcy--Your question reveals a tension between the use of oral medications versus natural food products in affecting “poo”.  The advantage of medications is that they are more accurately measured, manufactured, and tested by common scientific standards.  So when you ask about a natural food product the same standards are not applied and you are dealing with more anecdotal and unique formulations that are hard to generalize from for advice.  Here are some points to consider.

1). I am at odds with the current medical over-use of oral stool softeners which liquefies stools so as to eliminate normal voiding signals which would come from normal well-formed stools knocking at the anal exit.  I share your concerns, but you have to see normal daily stools in order to evaluate any relationship between diet intake and his BMs.

2). Unfortunately, eliminating stool softeners and substituting fiber does not mean dealing with the engrained holding reflex of these children which also distorts his stools.  You need a daily BM, which is normal, to see normal results.  Then and only then can any alterations in diet be judged over the course of a week or two. 

3).  Liquid intake is extremely important which is often overlooked by parents in stool production.  Any increase in fiber should be associated with added and adequate liquid intake. Sufficient liquid intake alone is important.

4).  Too much fiber could actually be a problem with too much stool production or producing hard and painful stools.  This is too often overlooked in the email forums.

5).  The Soiling Solutions protocol assures daily stool production which means early cessation of soiling and a daily look at normal stool production.  This assures that you can better evaluate the effects of any diet changes which would include tapering off of a stool softener and which can be very unique to the individual child.  I just checked and see that you purchased the Clean Kid Manual-IV and are on the SS Forum, so at least you have a good start.

6). I personally think that the emphasis on diet and possible food allergies are way overdone by parents of children with encopresis.  Why pick fights with the child and the rest of the family over food if the SS protocol alone solves the problem?  The SS approach will work in the vast majority of cases because you are really training in the appropriate voiding reflex to take over from an overlearned holding reflex regardless of diet!  Look at the general population with all kinds of diets and no issues with soiling. I think diet should be based on general health considerations rather than this specific condition of encopresis distorting food choices.

I hope that I have lent some perspective to your question, even though I could not give you a formal simple answer!

Michele--Your doctor’s reaction, unfortunately, is fairly typical.  They are themselves subject to the same cultural forces as we all are about this very private area of the body and the elimination of highly malodorous bodily wastes, especially poo, which is, quite literally, a biohazard for its disease spreading potential. You already know this from your daughter’s repeated bladder infections. Fecal Incontinence is the number two reason why the elderly are placed into nursing homes; many adults suffering from Irritable Bowel Syndrome (IBS) are afraid to leave their homes; and even loving moms like you find it hard to maintain an unemotional response to poo accidents.  Verbal and nonverbal signs just have a way of breaking out; smell is a very primitive disgust “trigger”.   Your child hiding her soiled underwear is just another sign that she is picking up on the same cultural reactions.  This problem, encopresis, can result in physical and mental emotional problems that must be addressed.  In effect you all are caught in a web of medieval punishment, but we should expect or demand more of our physicians when they have so much ability to help you and other children by being more open to the Soiling Solutions protocol.  So be kinder to yourself and become a strong advocate or mother bear for your child.

 I developed the Soiling Solutions(SS) protocol while I was an invited visiting professor in Perth, Australia and began clinical applications when I returned to the USA.  I produced a manual in 1998 for sale over the internet at www.soilingsolutions.com which you have apparently discovered.  The Clean Kid Manual (CKM) has undergone three revisions largely based on feedback from parents on the exclusive Soiling Solutions Forum which comes with a manual purchase.  I cannot lend understanding and detailed procedures for an adequate home-based treatment except through that manual which you or your health service could purchase from my website (the store offers discounts for medical professionals). I suggest you read that manual and proceed with treatment.  If your doctor rejects assistance or agreement with following the protocol, tell him that you are placing him on the back burner and that you will report the results to him later.  I would be happy to talk with him via Skype at “SoilingSolutions” or a phone call.  Share this www.encopresis.org  Q & A column with him and he can read many recent parent reports by clicking on the “User Comments” link on the SS website. I will attach here my medical journal article on the history and explanation of Soiling Solutions, editorials regarding it, and a picture of my toilet stool trained cat which kids love.  Maybe, making copies for him when you inform him of your intent may help him toward some understanding, if not approval.  Look, they have failed you, period!  You have a right to be an angry mother bear. You could show him a copy of my manual along with your diary records of results later on.  My program will end the soiling within 1-2 weeks and you will be on a forum with other parents using the manual (some 300+ parents)!   Fortunately, even with older children, the mental and emotional consequences quickly fall away with success.  Let all of us know your doctor’s reactions if you follow through using the Comments option below this response!  DrC.  
 

W.—There is so little information here, but here are some observations.  In custodial disputes and prison circumstances where the concerned parent is in disagreement on treatment it is virtually impossible to be successful with an intervention.  Clearly, even a visit can be highly disruptive and subsequently preoccupy a child that would interfere with treatment.  If the father actually approves a treatment protocol and transfers his credibility and support to you that would be helpful. Is he your brother?  If he is a saboteur, I would be very pessimistic about success.  If the treatment is to be truly successful, it really has to be done in the home by actual hands on intervention, not through “counseling” at school.  My program is your best chance, but it may just be too intense for Grandma and yourself who would have to be involved virtually every day for the Soiling Solutions daily treatment hour.  Can you both assure that degree of commitment?  It would be a real opportunity for “bonding” with the child because you will go through trials and tribulations together toward a common and successful goal of eliminating soiling.  This is a form of tough love and real love.  Parents with diabetic children and insulin shot requirements can face this every day for a lifetime!  A half way and compromising approach simply won’t work and will worsen the complications for the child. 

B.—Say hi to the UNC folks for me!  The UNC Center for Functional GI and Motility Disorders is a highly reputable institution and I am assuming that the Constipation Clinic is contained in that center.  I coauthored a chapter in a medical text with one of their researchers and I do know the Co-director who recently received a $3.3 million dollar NIH research grant for Irritable Bowel Syndrome.  Now for the bad news.  Although the principals there know me and helped me to get a publication in “Digestive Health Matters”, they do not utilize my Soiling Solutions protocol to my knowledge.  So I will be very interested in their reactions to your request.  I have over 3000 parent “informants” out there who let me know what is going on in their community.  The SS protocol is typically dismissed.  There are other parents in your particular area who have finally adopted SS on their own.  When parents report back with highly successful results they typically report encountering indifference and dismissal as if the SS approach working was just a fluke.  However, I have a lot of “missionaries” out there and hope that eventually we will have more of an impact.

Although my approach is regarded as “aggressive,” I view it as heading off “…damage to his little body.”  Research shows that the colon does not necessarily return to “normal” and remains stretched out even in successfully treated children at a 4 years follow up.  The sooner you get “aggressive” the better off he will be!  Also, you wondered about the nature of his BMs, rawness, and rash with his current “maintenance therapy” in relationship to his diet.  Well, with the SS protocol parents get a much better and complete picture of the relationship between diet and stools because they get a clear look at his daily, complete BMs which occur only with my program.  Any variations in diet you will see the results of in the next day or two with his daily complete BMs.  The “back up” and over-holding reflex with poop and pee in his pull ups contribute to skin breakdown.  The bladder becomes involved with all of the additional pressure and confusion that goes with being backed up.  The SS protocol will clear this up fairly quickly within a week or two, though I think you would be well advised to check my website for “bidet inserts” which will clean that area with just water alone.  I am not popular now with diaper and paper manufacturers!  I have not heard of the leg pain associated with constipation, but it is possible that his muscles involved in the holding are responsible.  That is the external anal sphincter or EAS and the levator ani could be involved in some way, but I am speculating here.  Also, some children show a lot of strain in stiffening their lower body in resisting their BMs which would involve the leg muscles.  Do report back to me on your experience at the Continence Center, I will keep it confidential!

Darlene—Great job on providing background information.  You show some excellent insights, but let me see if I can add some new perspectives.  You have noted the effects of change on your daughter and she appears to be very sensitive in this regard.  My guess is that her gut is a “target” organ most affected by any form of change.  Stress (+ or -) slows the gut (Sympathetic Nervous System dominance), but sets her up for a “rebound” reaction of powerful activation of the bowel (Parasympathetic System dominance) in a kind of “let down” or release phenomenon.  This places her more at risk for accidents.  We know relaxation is very important for having a complete voiding reflex—cats are very easily stressed organisms and they are very subject to holding and megacolons.  Stool consistency is an important variable and loose stool, often a result of Miralax, results in frequent accidents because the sub-mucous membrane of the colon cannot discriminate adequately between liquid stool and gas which leads to “oops” moments.         

You noted the GI doc who recommended biofeedback because of her not activating the External Anal Sphincter (EAS) which consists of voluntary muscle fibers which engage the “holding reflex”.  That surprises me and I wonder if you misunderstood her/his report.  I suspect that he reported that she could not “push” the finger back out, which is the “voiding reflex” and which is what you want to be trained.  Most of these children are great “holders,” but poor “pusher outers!”  Also, this may be more a problem of dysnergia or poor coordination of these two important reflexes in the hold-release sequence which is necessary for adequate colo-rectal control.  Also, biofeedback is not usually regarded as effective until the child is 6 or 7 years for cognitive and practice/transfer of training reasons. In fact, this is one of the reasons as an early biofeedback pioneer that I developed the Soiling Solutions (SS) protocol which is a retraining procedure which can be done at home with a carefully stepped and timed sequence of short sits with voiding assured by the use of suppository and/or enema “primers” which enhance and condition urge signals and the proper voiding response in such a way that the child’s own colo-rectal response will take over from these artificial voiding prompts.  Unfortunately, for you and me, it does not appear that our culture and physicians are quite ready for my intervention despite my chapter in a medical text and a medical journal article on the SS protocol.  Too many people out of total ignorance assume that it is a punishment or threat approach to treatment and not a methodical rational retraining approach.

Today physicians are very reluctant to employ my protocol and prefer what is called “maintenance therapy” and the canard that “your child will grow out of it,” which is what you are doing and which I am fighting.  Finally, from what you report with her diet and use of Miralax I would not expect her to have an obstruction.  I think the factors I mentioned above could be a sufficient explanation for what is going on with your daughter.  Keep reading on down this column, parents should have a choice. 

Helen—Yes, intense, busy children may be more at risk for encopresis.  They just won’t take the time to sit, relax, and go.  The relaxation actually is very important for the voiding reflex, intense emotional engagement tends to slow the GI tract and your 9 y/o son can succeed in holding and fighting off his urges which can lead to an enlarged colon.  So, he has a well trained, over learned holding reflex which is gaining on and replacing his voiding reflex.  Accidents will occur and they are just that, oops!  The secretiveness is bad news.  It is avoidance, denial, and it only buries the problem deeper and deeper.  He will be harder to treat and resistant to facing the truth.  I am afraid a few “tips” are not going to take care of this.  You could go to the open public forum (email addresses protected) at www.encopresis.org  for all kinds of tips.  Maybe you will luck out.  Unfortunately, my experience of these forums is that they only result in a lot of helter-skelter applications that really don’t solve the basic issues and they only delay using an effective, well organized treatment protocol.  You were wise to do your research and look for my manual, the Clean Kid Manual, which can only be purchased from www.soilingsolutions.com.  If you purchase it you will gain access to other parents on an exclusive email forum who have been very successful and are using the manual.  Some like to stay on and help the “newbies.”  The parents are all in it together, have the manual in common, and share tremendous insights and support. 

Charlotte—You have a problem that requires action by all of you to work toward a solution.  At 13 y/o he has the capacity for some insight and hopefully cooperation.  He has no real control over this problem and needs a healthy dose of HOPE and tough love.  Mere talking or lecturing will not change him.  I presume that organic causes by now have been ruled out and that the standard pediatric approaches have not worked to give him time “to grow out of it.”   You need a plan on how to approach him with his father and then carry through with his cooperation and your supervision.  I will send you my medical journal article on the Soiling Solutions protocol as an attachment in an email which you should read and let him read.  If you are at all encouraged by that article then order the Clean Kid Manual which details the treatment plan from www.soilingsolutions.com.  Frankly, it is your only hope because this problem is very likely to continue for some time and ruin your marriage.  Joining a parents’ forum comes with the purchase which will really reinforce you.  The protocol, if faithfully followed, will require his “buy in.”  It will stop the soiling fairly early on within one-two weeks which will be a real breakthrough for you, but continued supervision is going to be required.  He will not be flushing that toilet without your seeing and confirming his BMs first for up to a year, especially if there is backsliding, which often occurs.  My program is not easy and at his age he will have to self-apply suppositories and enemas in a carefully programmed and timed sequence that will guarantee daily BMs.  He may need dad’s help in the beginning to calm him and follow through.  Sorry, you three will all have to make a considerable commitment to this.  Your action and determination here could really increase your credibility and his appreciation for you, if you can get through all the static that is almost sure to result.  Be prepared to be an evil stepmother!  Maybe he has been waiting for some definitive action to end this problem.

Ilyse—The diet looks fine with lots of fiber and a reasonable diet of protein sources.  Small and hard BMs are not good and over time you will relate more to what goes in and what comes out.  Constipating or binding foods could result in a hard uncomfortable passage of stools which can lead to some children “over holding” and resisting sitting on the stool for their BMs.  A vicious escalating cycle of pain-hold-more pain-more holding, is possible and become hard to overcome by predominate pediatric treatments today which merely emphasize “maintenance therapy” with the use of oral laxatives or stool softeners. Mushy BMs are OK if they do not get too much on the side of being “liquidy” or pudding-like in nature which could compromise the ability to detect the difference from passing stool or gas. That could result in soiling with harsh and confused reactions by the parents and actually promote stronger and more frequent holding attempts.  Encopresis with or without constipation may result.  Your boy will very likely copy your husband in his food eating habits just by observation, though your influence will still contribute to his eating habits.  You are doing a good job, just keep observing and gathering information.

Interesting, here is an admission of up to a 30% failure rate for 5 years of “top down” laxative use in dealing with fecal incontinence for severely constipated children.  1, 2, 3, 4, 5 years and a 30% failure rate!  That result could occur via time and trial and error alone!  This is the same research group that showed the colon does not completely restore even after 4 years of the successful remission of fecal incontinence!  Their innovation here was to add enemas to their standard treatment protocol.  No training aspect was introduced, just so called “maintenance therapy” to assure repeated "clean outs?"  Really, does the medical profession wish to "maintain" fecal incontinence?  How odd!  This would appear to be a variation on, "First do no harm," but adding on, "and do no good?" Why is that?  They did not use enemas in a rational bowel retraining protocol such as that pioneered by Soiling Solutions.  Basically, these authors used a “brainless” approach to the treatment of encopresis or fecal incontinence.  The authors left out the critical component of a normal reflex arc engaging colo-rectal signals>>a brain connection with sitting on toilet stool cues>>voiding reflex.  The authors appear to be trying to improve on “maintaining” the dominant prepotent sequence of colo-rectal signals>>brain-wherever, including the toilet stool>>holding reflex!  My hope is that now they will do a follow up with the Soiling Solutions protocol to reprogram the necessary and desired BRAIN mediated VOIDING reflex arc.  I would be pleased to offer free copies of my Clean Kid Manual for any such research project. DrC.