Constipation

Constipation is defined as infrequent or difficult spontaneous defecation. It is usually characterized by hard stools and pain during defecation, as well as abdominal pain and bloating.

The Situation With PCH2 Children

Constipation is common in children with PCH2. Contributing factors may include reduced mobility, inadequate fluid intake, low dietary fiber, medication effects, and possibly additional, as-yet unidentified medical mechanisms. 

Maintaining regular bowel function represents a significant challenge in the care of children with PCH2 and has a direct impact on their wellbeing, as they frequently experience substantial discomfort from the symptoms noted above. For this reason, regular bowel evacuation through medication is often required.

Therapy

Approaches to therapy include home remedies such as adequate fluid intake and providing stool-softening foods, as well as the use of oral or rectal laxatives. 

One oral laxative is macrogol (German brand names Movicol®, Laxbene®, Kinderlax®), which helps maintain soft stool consistency. 

Rectal laxatives include enemas (German brand names Microklist® and Mikrolax®) and suppositories (Lecicarbon ®). Regular enemas using a 1:1 mixture of neutral oil and glycerol may also be effective.

Some parents report that their children sometimes need painkillers or sedatives due to the discomfort and pain caused by constipation.

Even though constipation is common in children with PCH2, parents should always verify whether there is an anatomical or other treatable cause.

Tips to Try Out

• Ensure adequate fluid intake and provide a fiber-rich diet (for tube-fed children, look for formulas labeled “fiber”).
• Avoid constipating foods.
• Stool-softening foods include pears, prunes, applesauce, and whey.
• Maintain soft stool consistency with macrogol.
• Gentle abdominal massages.
• If necessary, regular medication to induce bowel movements in consultation with the pediatrician.

Scientific Background

Data From The Literature

• In his paper “Das behinderte Kind” (The Disabled Child), Weber P. (2013) describes in detail numerous gastroenterological problems affecting disabled children, including the frequent occurrence of constipation.

Natural History Study from 2014

19 of 33 children experienced constipation from an average age of 2 years. This persisted throughout the course of the disease. Fifteen of the 19 children with constipation required regular (more than twice weekly) medication to relieve constipation. Commonly used medications for this purpose were Lecicarbon suppositories, enemas such as Microklist or Babylax, and Movicol (German brand names).

Natural History Study from 2023

Constipation occurred in 31 of 53 cases from a mean age of 2 years. It ceased over time in only 4 cases. 22 children received at least one oral laxative, most commonly macrogol (usually as long-term medication). 28 children received at least one rectal laxative (usually Microklist/Microlax or Lecicarbon). In addition, most of the children required assistance with evacuation through rectal stimulation.

This entry was written to the best of our knowledge based on the reported experiences of parents of affected children. In addition, currently available data from the 2014 and 2023 Natural History Studies of PCH2 and from general medical literature has been included. It is not a substitute for consulting a medical professional. PCH2cure assumes no liability in this respect.