Condensed from the lecture given at the Arizona Connections meeting by Dr. Cheri Carrico, Ph.D., CCC-SLP, Assistant Professor and Director, Speech Language Hearing Clinic, Elmhurst College, Elmhurst, IL
Feeding issues are important to the developing child for numerous reasons. Aside from fulfilling the need for sustenance, meal times also provide a backdrop for children to learn socialization skills and expand their opportunities to communicate. Since eating is central to so much human interaction (be it a family meal or a wedding reception), children experiencing difficulty feeding may miss tremendous opportunities for both social and language development.
While feeding problems are not among the indicators considered in a clinical diagnosis of CdLS (gastroesophageal reflux being the notable exception), many people with CdLS display a feeding problem at some point in their development. They may have difficulty sucking, either at the breast or from a bottle, due to a small jaw. Likewise, they may have problems swallowing food, resulting from a lack of coordination in their mouths and throats. This lack of coordination can result in coughing, choking, gagging, or aspiration (breathing food into the airway).
A. Form a Team
Caregivers looking to remedy feeding problems can put together a team of individuals to implement a feeding treatment plan. (Parents should lead the team since they are their child's best advocates.) The person's physician should be included if she or he knows the individual's overall health (particularly the gastrointestinal tract) and can assist with allergic reactions and medications. A speech-language pathologist (SLP), trained specifically in feeding issues can assess the readiness of a person to eat, discuss the management of food, and deal with an array of feeding issues.
Occupational and physical therapists can also be consulted if the person needs adaptive devices or assistance with positioning while feeding. A nutritionist can assist in determining the caloric intake and output and establish the quantity and types of food necessary for good nutrition. A dentist is an excellent addition to the team if the individual has dental issues. A teacher, aide, or anyone else who is going to feed the person should also be included so that they may follow the feeding plan.
B. Create a Plan
When the team is assembled, they should discuss the particular feeding issues that apply to the person with CdLS. These issues may include the initiation of oral feeding, food sensitivities, testing for gastroesophageal reflux, tube feeding, and diet as well as other feeding issues commonly associated with developing children. When pertinent issues have been identified, the team can agree upon appropriate feeding strategies. The key to success is focusing on the person's interests and abilities.
C. Address Feeding Issues
Food Sensitivities -- Introduce change gradually if a person with CdLS has food sensitivities. Generally, the more gradual the change, the more likely the change will be successful. When a person tolerates something, he or she is ready for the next step. Introduce only one change at a time so that allergies or sensitivities can be isolated more readily. For example, change the taste or the temperature or the texture of a food instead of introducing two or more of these. Once the person tolerates a variety of tastes, temperatures and textures, then gradual combinations of these elements can take place. Increase the person's tolerance to temperature, texture and taste by using the following techniques.
With temperature sensitive individuals:
With texture sensitive individuals:
With taste sensitive individuals:
With taste insensitive (hyposensitivity) individuals:
In addition to food sensitivities, caregivers should be aware of the impact of the feeding environment. Be conscious of aromas, lighting, noise, and room temperature. Note behavior in relation to the number of people present, unfamiliar people present, or the person actually doing the feeding. Observe the table/chair height that the person uses as well as the comfort of the safety belt and his or her clothing. Examine the table setting, seating arrangement, and the utensils/dishes used.
Reflux -- When forming a feeding treatment plan, caregivers may have to account for a person's gastroesophageal reflux. Those seeking specific information about reflux can request a specific treatment protocol from the Foundation as well as read the lead article in the May/June 1999 edition of Reaching Out.
Tube Feeding Transition -- A feeding treatment plan for the person with CdLS who is currently tube feeding is important to help the individual anticipate the challenges of eventual oral feeding. For example, to assist the person in associating feeling "full" with the feeding environment, feed in areas where meals occur and around household meal times. If tube feeding is a negative experience for the person, avoid feeding in meal areas/at meal times so that the negative experience does not become associated with oral feeding.
To avoid later oral hypersensitivity and ease the transition to oral feeding, stimulate the mouth and face during and after tube feeding. This provides positive oral sensory experiences, stimulates sucking and swallowing, and develops sensory awareness, perception, and discrimination in the mouth and face.
The person's face and mouth can be stimulated with a pacifier, fingers, toys, even foods (with a physician's consent) if the individual is medically ready. The end result is to encourage the person to associate pleasant oral and social experiences with a full feeling in the "tummy." As with other strategies, the stimulation should start gradually. Stimulation begins with just showing the person the stimulus (pacifier, fingers, toys), eventually putting the stimulus on his or her face and finally introducing the stimulus to the mouth.
Encourage putting safe stimuli in the mouth during non-feeding times as well. If the person does not tolerate oral stimulation while awake, gently provide oral stimulation while she or he sleeps. In addition to providing oral stimulation, give the individual utensils and dishes with which to play. Encourage the person to feed the feeder, another person, a doll, stuffed animal, or puppet.
If a person with CdLS is tube fed and has medical clearance to feed orally, the transition to oral feeding should be gradual. Oral feeding should last no more than 15-30 minutes (to avoid fatiguing the individual) and be supplemented by tube feedings. Vary the tube-feeding diet to avoid later sensitivities and allergic reactions. Gradually add new foods every three or four days in order to isolate any foods to which the person may react negatively. Remove the feeding tube only when oral feeding is completely stabilized.
Development Issues -- A feeding treatment plan will also need to take into account issues regularly exhibited by many developing children. For example, children of late preschool/early kindergarten age often reveal that their preferences have changed, that they no longer like their "favorites," and that their "eyes are bigger than their stomachs." Many children suddenly become picky about the texture, taste, temperature of food as well as its appearance, smell, or even presentation. They may establish conditions under which they will eat or the manner in which food is prepared.
Dr. Carrico's entire lecture is available on videotape and includes a comprehensive outline. You may contact the CdLS Foundation by email at: info@cdlsusa.org or give us a call at 800-223-8355 to receive your copy.