Many of the individuals, especially infants and young children, with MECP2 Duplication Syndrome have problems with eating and drinking. These problems most frequently stem from low muscle tone and weak reflexes. One serious problem that can result from these issues is the aspiration of food particles of liquids into the lungs.
A complete feeding and eating assessment can be very useful for most if not all these children. These are best done by therapists who specialize in eating and feeding issues. Typically these are Speech, Occupational, or Physical Therapists who have special training, and sometimes there are teams of specialists who take part in these assessments. The assessment has two parts. First, a direct observational mealtime assessment of the child and caregiver. Second, a videofluoroscopy study that can observe what happens inside the child’s throat during swallowing.
This post cannot possibly give all the relevant information, and getting competent expertise is essential. This post simply points out a few things to consider. Before doing the actual assessment, you and your healthcare providers can determine if there are enough indicators for doing the assessment.
Aspiration problems can come either from improper swallowing, but it can also come from reflux, contents of the stomach backing up the esophagus and spilling over into the windpipe. Some children have both problems, and MECP2 duplication syndrome is a risk factor for both problems. If a child is having problems with aspiration, it is important to know whether it is caused by swallowing problems or reflux. If it is a reflux problem tube-feeding may not solve the problem unless there are additional procedures done to prevent reflux. Furthermore, if the problem is entirely due to reflux, stopping oral feedings will not help the child and may actually aggravate the problem.
When reflux does occur due to swallowing problems, it is important to differentiate between severe swallowing problems that cannot be managed with positioning, food consistency, and other feeding techniques. When aspiration issues can be managed with feeding techniques, this is usually preferable to tube feeding, but when significant aspiration problems persist even after addressing feeding techniques, a gastric-tube feeding will usually make things better for the child and the family. Nasogastric tube feedings (feeding through a tube inserted through the nose) may be a temporary alternative but is not generally recommended for long-term use.
Positioning should be individualized, but generally once a child leaves infancy, there are a few common essentials to consider. First, the child should be seated in an upright position. Second, the child must be stable and well supported. Third, the child’s head should be flexed slightly forward.
My mom always told me don’t put your elbows on the table, its bad manners. Well Mom, for kids with low tone, putting elbows on the table or laptray on their wheelchair can be very helpful to increase stability. Some kids will need special positioning supports. …And it may sound crazy, but having the child’s feet firmly on footrests or the floor can do wonders for improving oral-motor control. If you don’t believe me on this one. Try sitting with your feet dangling and your back unsupported and drinking something. You can do it but it is a lot harder, and the chances that something will go down the wrong way get a lot higher. For our kids, who have low tone and a lot of difficulty maintaining stability, the difference is a lot bigger.
Tipping a child’s head back while feeding (sometimes called bird feeding) promotes aspiration and must be avoided. Often caregivers unintentionally encourage children to tip their heads back while feeding. Sitting on a lower chair than the child so that the feeder is looking up to make eye contact and presenting the spoon from below (not from above) helps promote flexion. Standing over the child while feeding also promotes extension and aspiration.
Plastic cups are great but always use cups that are transparent or translucent so you can see the liquid in them. If you can’t see where the liquid is and you are holding the cup to give the child a drink you are either likely to tip the cup too much, which will make the child pull back, or have to get above and behind the child to see where the fluid is, which will encourage the child to look up and aspirate.
These are just a few things to consider. Getting a good assessment form an eating and feeding expert can help much more. Here are few web resources for more information:
There is a great article available on Medscape:
Medscape may tell you that you need a medscape account to access this, but Medscape is a great source for health info and it is free. So you may want to sign up.