Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.
Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.
At the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies. At the end, we discussed what may be the issues and a plan.
From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines. She also has a milk protein allergy which is common among preemies.
From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.
All of these things, hamper her feeding progress.
The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber. It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.
The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.
Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.
Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.