Constipation Survey Results

In May of 2014, parents of 62 children with Pitt Hopkins Syndrome (PTHS) completed a survey on constipation. The purpose of the survey was to better understandthe prevalence of constipation in our Pitt Hopkins community, the strategies parents of children with Pitt Hopkins use to manage constipation, and to share this information across our community so parents can better manage their children’s constipation.

The average age of the child was 8.3 years of age with a range of 1 – 28 years of age with a median of 6 years of age. Respondents included families from USA, UK, Canada, Ireland, Netherlands, Brazil, Germany, Sweden, Isreal and New Zealand with USA and UK representing 77% of the responses

Overall results of the survey on constipation indicated:

  • 84% (52/62) of the children have experienced constipation.
  • With the 50%/50% split in males and females, both groups experienced constipation and it did not appear to be worse in one gender vs. the other.
  • In many cases, constipation became evident very early with the earliest being reported as soon after birth or at a few weeks old (78% before the age of 2).
  • There were varying methods to manage or alleviate constipation. Treatment strategies include use a variety of medicines, supplements, probiotics/enzymes, exercise and diet. Depending on the situation, these strategies are used individually or in combination with each other.   Some highlights from the responses include:
  • The most prevelent medicine being used is polyethylene glycol (PEG or Miralax) and senna.   Other medications used individually included sodium citrate/sodium lauryl sulphoacetate, bisavodyl (Dulcolax), glycerin magnesium citrate, and magnesium hydroxide.  Suppositories and enemas were used.
  • Some parents used supplements.   Some supplements used included senna, lactulose, probiotics, enzymes and omega oils.
  • Many parents used probiotics and some of those parents recommended rotating different probiotics for continued effectiveness
  • Many parents modified diets over time as a management strategy. Changes to diet to include adding more fruits, vegetables and water.   Some parents also removed gluten, dairy and/or other components of their child’s diet. Some parents used coconut, flaxseed, or omega oils in their children’s diet.
  • There were no consistent trends in diet for children that had constipation vs. children that did not.
  • 12 of the 62 (19.4%) surveyed visited the ER or were admitted to the hospital due to constipation.
  • Most parents targeted for 1 bowel movement (BM) every day or every 1 to 3 days. Many parents reported stepping up management (medication, diet changes) after 2 – 3 days without a BM.

For those family members and care-givers that are part of the Pitt Hopkins Syndrome Google Groups, the complete survey can be accessed on our Google Groups site.  If you are not a member of  this google group, you can learn more about joining by visiting this page:


If you are interested in reading more about constipation and constipation medication, below is a link to a very good resource.

Chronic Constipation, New England Journal of Medicine, Anthony Lembo, M.D., and Michael Camilleri, M.D.

Disclaimer:   The information provided is from the combined experiences of parents of children with Pitt Hopkins and is not from a medical doctor nor has it been reviewed by a medical doctor.   It is recommended that you contact your own medical professional and discuss with him/her your strategies to manage/alleviate constipation and appropriate dosages of any medicines, supplements, etc..