More "Maintenance Therapy" Forever at a Top Medical Center for Encopresis.

Question: 

My 5 yo son has been battling encopresis for 2 years.  Per UNC constipation clinic, he is on a 2 caps of Miralax daily "maintenance" and though we had some success with no soiling following a recent "cleanout", he is now basically oozing poop all day long and having virtually no substantial bms.  I change him 10-15 times per day and have consequently resorted back to pullups, so now he is having pee accidents all day too.  He even leaks poop at night.  Quite often his leakage has a gritty texture or the tiniest little poop balls that cling to his skin and scotum and are virtually impossible to clean.  He is often raw with skin rash and screams even when "hosed off" with warm water in the tub.  I keep him covered in butt paste all day long.  Is this texture odd or indicative of any particular complication, ie food allergy, etc.?

Also, he wakes frequently with excruciating leg pain.  Might this in some way be connected?  I am wondering if there is a common nerve or some other with the gi issues.  Motrin relieves the leg pain.

He's a cheerful, cooperative guy who does not seem particularly troubled by his issues.  He never complains of stomach cramps, is willing to sit regularly on the toilet, but says that he just can't feel what he calls, "the automatic kind" of poop.

Obviously, I am considering SS as I am at the end of my rope and fearful of damage to his little body.  I am planning to re-visit UNC GI and hope to discuss the idea with them.  Thoughts?

 

Answer: 

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!

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