Tracey Webb and Ben Jacobsen of California came to the Arizona Connections meeting seeking information to help their daughter, Caitlynn Jacobsen (age 3), with a number of issues, including assistance with the transition from tube to oral feeding. In addition to gaining information about communication and language resources during the general session, the Webb/Jacobsens were able to participate in specific consults with doctors Mary Morse and Cheri Carrico. The feeding consult with Dr. Carrico was particularly insightful since Dr. Carrico is a speech-language pathologist who provides families with tools to make the feeding process smoother.
Tracey and Ben were prompted to seek a feeding consultation due to Caitlynn's history of tube feeding as the solitary means of nutrition and food intake. They were looking for suggestions for beginning the process of transitioning to oral feeding after having had several unsuccessful attempts. "Caitlynn has never known any experience other than being fed by tube," Tracey explains. "She was fed by NG tube for the first two months of her life [followed by the placement of a g-tube]".
Although Tracey believes that Caitlynn's feeding issues do not impact their daily routine to a great extent, she believes tube-feeding can be limiting. "Caitlynn is fed every three hours and seems to tolerate food well in this manner. The process lasts less than five minutes," according to Tracey, "and supplies are easy to transport when (the family) is away from home. It is really no big deal; however, it is difficult in other ways. For instance, because Caitlynn is still being tube fed, we can't put her in day care. She gets nursing care five hours per day. We are fortunate that Medi-Cal (local health insurance) pays for this." If they could encourage Caitlynn to feed orally, the expense of private nursing care might no longer be necessary.
Previous efforts toward building success with oral feeding for Caitlynn included "early intervention" classes that offered snack time as part of the daily routine. Ben and Tracey also chose to have Caitlynn sit with the family during mealtime. Although Caitlynn never ate during these meals, Tracey noted "Caitlynn had started taking food off of her sister's plate and touching it to her mouth. While Caitlynn did not actually put the food inside of her mouth, she did both smell and taste it before eventually throwing it on the floor. Caitlynn is very orally defensive when it comes to food, but not toys!"
Oral defensiveness is not uncommon, especially among those who have only experienced tube feeding. In fact, it is estimated that feeding difficulties affect as many as 75% of children with CdLS. Dr. Carrico suggests that the use of toys as part of the feeding process can be a valuable tool to making an individual with CdLS more comfortable with the idea of oral feeding. The introduction of toys near and eventually, into the mouth can foster the association of pleasant oral experiences. As with most steps in a feeding treatment plan, the key is to begin gradually. Dr. Carrico also advocates including the person with CdLS during the household mealtime. This inclusion can have many physical, emotional and social benefits in addition to nutrition, such as comprehension of instructions or non-verbal guidance.
The Webb/Jacobsens are able to see some of these benefits as a result of including Caitlynn at family meals. They note "Caitlynn is just starting to understand turn-taking and cause/effect." Caitlynn also has the benefit of socializing with her sister and parents during this family ritual.
The Webb/Jacobsens found that the AZ Connections materials contributed to the goals they have established in order to help Caitlynn feed more productively. Tracey and Ben concluded that "the doctors at the Connections meeting were helpful; they suggested some things we hadn't tried. They also validated some of the things we were already doing."
For more information on Dr. Cheri Carrico's presentation on preparing a treatment plan for feeding issues, please refer to the Scientific Spotlight feature in this edition of Reaching Out. You may contact Lynn or Mindy at 1-800-223-8355 or e-mail them at familyservice@cdlsusa.org to obtain a comprehensive outline of Dr. Carrico's presentation or additional information about tube feeding, gastroesophageal reflux, and other feeding-related issues.