Almost all children with CMD will have delayed toilet training. Delays to years 8-15+ have been known. There can be involvement and weakness with the anal sphincter muscle which will cause involuntary problems with toilet training. I am still gathering information on this section……
Some information from MDA USA: (Dr. Ed Goldstein MDA Clinic Director Atlanta)
Q:Any suggestions with Toilet Training 6 1/2 year old. We have work on this with no success
A: As per your difficulty with Toilet training, this may result from any of the above noted factors (Learning disabilities, Attention Deficit Hyperactivity Disorder (ADHD), Learning Disabilities LD)in additional to intrinsic abnormalities of bowel/bladder function secondary to myotonic muscular dystrophy. You may want to explore possible medical aspects of this problem with your physician. If they don’t feel that there is an underlying health problem producing your son’s accidents consider further behavioral interventions. Only attempt to correct one or two behaviors at a time. Consider using time cycling in which the patient is placed on the toilet on a strictly enforced schedule and strong positive reinforcements for successful performance. This may consists of treats, a star chart, reading or video period in the bathroom. Frequently parents are best able to judge those rewards which are most likely to produce the desired behavior in their children.
Basically, your on your own on toilet training the local doctor will refer you to the clinic which probably will not be able to help you. Its really up to the parents to execute toilet training which will require dedication. A good book on this is “Steps to Independence By Bruce L. Baker. It is available from: Paul H. Brookes Publishing Company PO Box 10624 Baltimore, MD 21285 United States of America (Also Offices in Sydney and London) Last Resort……….=====>Toilet Training Web Site
There may be involvement of the Colon with CMD. Harper reports that recurrent diarrhea as well as abdominal distention, colonic dilation and abnormal colonic peristalsis were reported in one 8 year apparently unaffected but then myotonic potentials were seen. Thus smooth muscle problems of the colon may be the first and only initial features of (Standard) Myotonic Dystrophy.
More information from a medical study
In the USA the Kimberly Clark corporation make a product called Good-Nites which is a diaper/Nappy that resembles regular underwear. They have a website. http://www.goodnites.com . They come in sizes up to X-Large 85 pounds plus. These might be helpful in managing incontinence.
This condition is also know as Encopresis. Here is a web page devoted to that subject Link to Encopresis page. This is a very comprehensive page that may assist you through this problem.
Here is a useful article on Encopresis from the American family Physician