Encopresis - a secret struggle

THE SECRET STRUGGLE OF ENCOPRESIS AND STOOL WITHHOLDING

Behind closed doors all over the world, many par­ents and chil­dren deal with a secret strug­gle that may linger for years. The ten­sion brings par­ents to their wits end, and the chil­dren expe­ri­enc­ing the issue are often left feel­ing mis­un­der­stood and alone, or worse, fac­ing the ridicule of their peers.

The root of these prob­lems: chil­dren not using the toi­let. These issues, for some, stretch well beyond nor­mal pot­ty-train­ing age. Some may just not be able to pot­ty train suc­cess­ful­ly. Oth­ers, how­ev­er, may refuse to sit on the toi­let after appar­ent­ly being toi­let trained. These chil­dren with­hold stool due to fear of pain or the desire to main­tain con­trol. This behav­ior fre­quent­ly results in stool acci­dents, called encopresis.

These issues are large­ly com­pound­ed when fam­i­lies are unable to enroll their chil­dren in school, sum­mer camp, swim­ming or oth­er activities.

As a pedi­atric gas­troen­terol­o­gist who has focused my career on toi­let train­ing chal­lenges in chil­dren with or with­out spe­cial needs, I have come into con­tact with par­ents at their most des­per­ate moments.

I’ve had a par­ent come to me when her 6-year-old child was hos­pi­tal­ized due to severe con­sti­pa­tion. Writ­ing to me after being up all night, in need of help, she was com­ing to the real­iza­tion that her daugh­ter was with­hold­ing stool.

I feel very dis­cour­aged,” she wrote, “as I under­stand it could take months to years to over­come our prob­lem. I’m also real­iz­ing what an impact this is hav­ing on our entire fam­i­ly, includ­ing sib­lings and espe­cial­ly on my daughter’s self-esteem.”

Anoth­er par­ent approached me when her son, after being suc­cess­ful­ly pot­ty trained for more than a year, had begun to have soil­ing acci­dents in preschool. The acci­dents lin­gered for more than a year. Not only had the teacher and stu­dents noticed, but the teacher had request­ed the par­ent to come to school for dai­ly “clean-ups.” The boy was not allowed to par­tic­i­pate in an enrich­ment pro­gram because it includ­ed fre­quent field trips, not allowed because he was unable to stay “clean.”

He is very embar­rassed, and says he can­not help it,” the par­ent wrote. “We have spent much time with stick­ers, tokens, can­dy – noth­ing works. At this point, I am desperate”.

One par­ent came to me after hav­ing to hold her son back from kinder­garten, afraid he would be “made fun of by anoth­er child for wear­ing pull ups or hav­ing an accident.”

The school has sent some­one over to try and help, and we’ve tried every­thing and noth­ing has worked, so you are my only hope,” she wrote.

Par­ents come to me for help, sup­port and answers, and what some don’t real­ize is they aren’t alone. In the midst of deal­ing with pot­ty issues day-to-day, they feel like they have no place left to turn, and the light at the end of the tun­nel has long been extinguished.

But these par­ents are far from alone and with­out hope. Thir­ty to forty per­cent of patients referred to a pedi­atric gas­troen­terol­o­gist have abdom­i­nal pain, abdom­i­nal dis­ten­tion, increased gas, and symp­toms relat­ed to stool with­hold­ing, with or with­out enco­pre­sis. And enco­pre­sis is a com­mon prob­lem, one that occurs in 1 to 3 per­cent of chil­dren at one time or anoth­er in childhood.

The preva­lence of enco­pre­sis is also like­ly under­es­ti­mat­ed, as many health-care providers fre­quent­ly are not aware that their patients have stool with­hold­ing and enco­pre­sis. Under­re­port­ing is also due to the stig­ma attached to this con­di­tion, pre­vent­ing par­ents from talk­ing with friends, fam­i­ly and health-care pro­fes­sion­als about the problem.

There is a solu­tion to this prob­lem. By pro­vid­ing per­son­al­ized coach­ing by tele­phone, we work through all kinds of lin­ger­ing pot­ty issues. I speak with my clients dai­ly to make adjust­ments in their children’s treat­ment based on the feed­back I receive, and move for­ward until suc­cess is achieved.

Toi­let train­ing is the great­est achieve­ment of ear­ly child­hood. With suc­cess­ful toi­let train­ing, chil­dren gain a sense of inde­pen­dence and self-esteem, and the dai­ly abil­i­ty to con­cen­trate in school and par­tic­i­pate in var­i­ous activ­i­ties. It is my belief that every child with rea­son­able cog­ni­tive and recep­tive abil­i­ties (abil­i­ty to respond to one-step com­mands) can be toi­let trained.

It takes work and ded­i­ca­tion, but it’s so worth it in the end,” said a par­ent of one of my clients. “My daugh­ter feels so much hap­pi­er, and she has expressed this to me many times. There is no more ten­sion in the household.”

 

Weight gain and growth in children who stool withhold.

It has been observed that chil­dren who stool with­hold and have enco­pre­sis may not main­tain their expect­ed weight gain and growth in height.

A child who is full of stool may expe­ri­ence abdom­i­nal bloat­ing and ear­ly sati­ety (full­ness short­ly after eat­ing). As a result, these chil­dren may lim­it their food intake and calo­ries. This may lead … → Read More: Weight gain and growth in chil­dren who stool withhold.

Encopresis in Older Children

Enco­pre­sis is not just in toddlers 

Although we under­stand that Enco­pre­sis (fecal soil­ing) is very com­mon, espe­cial­ly among tod­dlers, many are unaware of how many pre-ado­les­­cents and ado­les­cents suf­fer from stool with­hold­ing and enco­pre­sis. Despite the fact that they have had these prob­lems for many, many years, these chil­dren can be effec­tive­ly treat­ed — with … → Read More: Enco­pre­sis in Old­er Children

Relaspe/Remission: Will My Child Ever Get Off Ex-Lax

Once your child with enco­pre­sis is doing well, we work close­ly with you to slow­ly low­er the dose of med­ica­tion. The impor­tant thing to con­sid­er is that you are suc­cess­ful­ly man­ag­ing your child’s enco­pre­sis. If your child is able to be acci­dent free and have a hap­py, engaged child­hood, the use of med­ica­tion is a small price … → Read More: Relapse/Remission: Will he ever get off Ex-lax?

Reply to question about why most doctors know little about encopresis treatment

Yes­ter­day, a moth­er wrote me this very thought­ful and impor­tant ques­tion: Dr. Fredric Daum- so many doc­­tors- even pedi GI docs do not know much about this diag­no­­sis- oth­er than a def­i­n­i­tion. There is a sig­nif­i­cant lack of pro­fes­sion­al knowl­edge. Ulti­mate­ly, and unfor­tu­nate­ly, many of us don’t get the prop­er treat­ment pro­to­col for our indi­vid­ual chil­­dren- to meet … → Read More: Reply to ques­tion about why most doc­tors know lit­tle about enco­pre­sis treat­ment by Dr Daum

What to expect during encopresis treatment with Doctor Daum

The Enco­pre­sis Treat­ment pro­gram begins with a clean out fol­lowed by tran­si­tion to main­te­nance. The clean out and tran­si­tion process gen­er­al­ly requires four to five (4−5) days at home. All nec­es­sary instruc­tions are pro­vid­ed to you at the start of the pro­gram. Par­ents are urged to take notes to which they can refer as nec­es­sary. The … → Read More: What to expect dur­ing enco­pre­sis treat­ment with Doc­tor Daum

Back to School for Children with Encopresis

With the start of school result­ing in a major tran­si­tion for many chil­dren, fam­i­lies are like­ly to see sig­nif­i­cant changes in their child’s behav­ior with regard to toi­let train­ing. Stress­ful sep­a­ra­tion issues from the moth­er often results in stool and or urine acci­dents dur­ing the day. These prob­lems can be eas­i­ly resolved if par­ents and … → Read More: Back to School for Chil­dren with Encopresis

A Message to Parents of Children with Soiling and Encopresis: Setting Realistic Expectations

It is gen­er­al­ly hard for par­ents to under­stand and accept the behav­ioral com­po­nents of with­hold­ing and soiling/encopresis.

Over and over again, I am told: “ He can’t feel the poop”, “She didn’t know she had an acci­dent”, “She doesn’t mind sit­ting in poop”, “He does not even smell it”. All of these state­ments may be true. … → Read More: A Mes­sage to Par­ents of Chil­dren with Soil­ing and Enco­pre­sis: set­ting real­is­tic expectations

Recurrence of Encopresis during Maintenance Therapy

Stool with­hold­ing is a behav­ior best con­trolled by com­bin­ing sen­na (Ex-lax) with behav­ior mod­i­fi­ca­tion. An expert in the treat­ment of with­hold­ing and enco­pre­sis (soil­ing) should remain involved con­tin­u­ous­ly. The treat­ment process can be quite chal­leng­ing, both to the fam­i­ly and the doctor.

Stool with­hold­ing can­not be cured, but the fre­quen­cy of episodes can be con­trolled and … → Read More: Recur­rence of Enco­pre­sis dur­ing Main­te­nance Therapy

Urine Accidents and Stool Withholding

At an age when a child is expect­ed to be toi­let trained for urine (by age 3–3 ½), wet­ting dur­ing the day may be attrib­uted to active urine with­hold­ing. The uri­nary blad­der has a lim­it­ed capac­i­ty to store urine. When the vol­ume of urine retained in the blad­der over­comes that capac­i­ty, the blad­der will go into spasm, … → Read More: Urine Acci­dents and Stool Withholding

Dr. Fred Daum