Constipation
From Holoprosencephaly
Constipation and Management in Children with Holoprosencephaly
Julia Paganini, RN,BSN (original submission obtained from HPE Family Newsletter)
As a pediatric nurse, I have seen my share of children with constipation. Whether the constipation is due to poor diet or due to the medications we are giving them, it is never an easy task to treat. What works for one child might not work for another. Seeing what parents have to go through, I was happy to search for the end all, be all answer to constipation. I have bad news; there isn't one! When searching about constipation management and prevention, I was surprised to see all the different opinions. I expanded my search to include not only textbooks but also what we use in the hospital and in the community. I spoke with doctors, nurses, and parents to get a variety of options for parents to treat and prevent their child's constipation. The following paragraphs will describe how and why constipation occurs, and methods to prevent and treat constipation.
Constipation is responsible for an estimated three to five percent of physician visits with children. It includes a decrease in stool frequency and a decrease in fluid of bowel movements. Under normal circumstances, water is pulled from the stool as it passes through the large intestine. Slowed movement of stool lets the large intestine pull more water form the stool, resulting in the hard, dry stools that characterize constipation. Along with decreased appetite and discomfort, there are other side effects of constipation. The increased pressure inside the stomach that occurs because of constipation causes your child’s reflux to worsen. This is why you may notice your child arching and vomiting when they are more constipated.
When dealing with a child who is constipated, try to find the cause. Are they receiving enough fluid? Dehydration causes constipation because the body tries to keep water in the blood by removing additional water from the stool. This happens less frequently if a child is fed through a G-Tube. If your child eats by mouth, encourage your child to drink at least 1 to 2 liters of fluid per day. Water, low-fat milk, and low sugar decaffeinated beverages are the best choices.
Another thing to think about is fiber. Does your child have enough fiber in their diet? Dietary fiber helps keep the digestive tract healthy. Too little fiber in the diet can lead to constipation because fiber helps to hold water in the stool and increase its bulk, making it easier to pass. If your child is tube fed, the formula they are receiving should contain fiber. If your child eats by mouth, many fiber supplements area available over the counter. One that is used and recommended frequently is Fruit Eze. It is an all-natural blend of prunes, raisins, dates, and prune juice that can be given alone or with food or drink.
For children with holoprosencephaly, the main cause of constipation is poor colonic motility. This means that the rhythmic muscle contractions of the intestines that move the stool, slow down. Senna containing products, like Senekot and Little Tummies laxative drops, improve motility. However, in practice, many physicians see that senekot becomes less effective over time and should not be used regularly, just an as needed basis. Lactulose or Miralax are the other medications that are effective in softening stool and increasing motility. They are usually prescribed to be given either once or twice daily until the desired effect is seen. In children with gas, miralax is often preferred. Another medication that increases motility is Go-lytely. In advanced cases of constipation, such as impaction, Go-lylely is a helpful treatment. A fecal impaction is a mass of dry, hard stool that can develop in the rectum due to chronic constipation.
When your child is impacted it may appear that they are having diarrhea but the watery stool is from the higher in the bowel which moves around the mass and leaks out.
Mineral oil is recommended frequently but should never be used in children with neurological disorders including holoprosencephaly. These children frequently have a problem with impaired swallowing and reflux. If mineral oil is aspirated, it could result in serious lung disease that could result in a long hospital stay or even death. If constipation is only an occasional problem, the use of suppositories or enemas can be used as needed.
If adding one more medication to your already long list isn't an option, then try massage. Many parents are turning to massage to help their infants and children suffering from colic, constipation and reflux. There are many different techniques to try but I found the following most effective. The very popular 'I Love You' stroke, involves 'I'- a vertical stroke downwards on a baby's left belly. The second stroke indicating 'Love' is an inverted 'L' involving horizontal stroke from baby's top right belly across to the left and a vertical stroke downwards to baby's right bottom belly. Finally, the 'You' stroke is an inverted 'U' commencing from the baby's bottom right belly, moving above baby's belly button and finishing at baby's bottom left belly.
Massage speeds the natural development of the central nervous system, affecting the nerves which are responsible for the muscle contractions leading to a bowel movement.
Abdominal strokes are always performed in a clockwise manner, according to the direction of movement of our intestinal contents.
Another alternative to medicine is increasing exercise or active movement for older children. Multiple studies demonstrate an association between constipation and inactivity. Physical activity can help increase movement of contents through the intestinal tract. However, increasing activity alone may not be the answer in preventing constipation.
In children with HPE, two factors exist to make constipation more likely; low muscle tone and decreased motor activity. Both of these make the colon more likely to retain stool for longer periods, leading to loss of water from the stool. Prevention is key! First try and find the cause. The recommendations provided are not limited to what works for you now and what your healthcare professional recommends. If you have found something that works, stay with it and good luck!
Recommendations for further reading:
http://www.generalpediatrics.com/CommonProbLay.html#Constipation Offers easy to read information from leading pediatric hospitals around the United States
http://www.umm.edu/ency/article/003125.htm University of Maryland article that offers many alternatives in treating constipation
http://www.findarticles.com/p/articles/mi_m0FKA/is_4_67/ai_n13467149 Offers recommendations for your child’s diet that will help prevent constipation
http://www.babycenter.com/general/newborns/baby/babycare/3835 Offers a guide and slide show to infant massage
For information about dealing with other potential health problems, treatments and medications, please visit our Miscellaneous Health Information category.
Click here to read what specialists have to say about caring for children with Holoprosencephaly: Doctor Q&A
If you have any concerns, please don't hesitate to discuss your concerns with your child's doctor(s).

