- Are you providing feeding therapy with parents present?
- Are you working closely with caregivers to understand their goals as well as provide teaching and training to build their feeding skills?
Each patient has the unique opportunity of teaching us something as therapists and really as human beings if we let them. As therapists, we have an interesting window into a families struggle including the depression, anxiety and stress feeding issues can create.
I would like to share an experience I have had with one of my patients. Our feeding team has been following a child who is medically complex for quite some time. This patient has a history of complicated medical issues, reflux and vomiting, aspiration of all liquids on initial swallow study due to impaired vocal cord function, constipation, and developmental delay. He came to us breast feeding but aspirating and not growing. We put a feeding tube in and as a team have been able to manage reflux, constipation, and growth issues with medical and nutritional strategies. We helped establish home feeding therapy with feeding team follow up every 2 -3 months or as needed.
Each time this child came to feeding team, we saw a similar pattern. He was growing and appeared more comfortable from a GI standpoint but continued to be very hypersensitive, displayed strong refusal behaviors, and was not progressing with his feeding skills. Caregivers would tell us what the home therapist was doing. I would make some suggestions for therapy and attempt therapeutic strategies. Patient would protest and become upset, caregivers would cry, and the session would end and so forth. We offered suggestions for medical, nutritional and therapeutic strategies- some were taken, many were not. Family was not willing to come to the hospital for consistent therapy. Progress was crawling along like a snail. This patient what was about 16 months at the time was taking zero to 3 bites of puree per session with all nutrition via feeding tube.
In some ways, I think I had given up. Then one day in clinic, patient’s mother looked at me and said “why aren’t we pushing him?”. “Why aren’t we exposing him to food?” “Why aren’t we doing everything we can?” “I have been on the internet and there are all of these things we could be doing!”
I must say, I was speechless for about 5 minutes. Hadn’t I been saying all of this for the last year? He was in feeding therapy although we knew he wasn’t progressing. I swallowed any feelings of defensiveness that I felt that I had not done my job. After all, this was not about me. And then I realized that I had not been providing information in a way that the caregivers could hear and understand- or maybe they were not ready to push their child and were afraid to have expectations that their child could eat?
I jumped right on the band wagon of this mother’s new found focus and determination. We put together a plan that included:
- exposing patient to food experiences coupled with structured feedings using a gentle behavioral approach focusing on acceptance of purees.
- consistent feeding therapy using new strategies at the hospital to assist with management.
- repeating the swallow study which he passed!
- adding in some medical management to boost appetite and gastric accommodation.
- altering tube feeding schedule to elicit hunger and boost desire to orally feed.
The results have been exciting! In 2 months, this child has moved from total refusal to now accepting 3 meals of 8 ounces of a variety of types of smooth puree with minimal refusal and no gagging. He is also working on cup drinking and at our last session accepted 2 oz of slightly thickened fluid via open cup with his puree meal. Our dietitians have adjusted his tube feedings and he now only requires water and a small volume of formula via tube to make up caloric and protein needs.
Future directions include moving toward acceptance of home made purees to boost calories, flavor and nutrient profile of the purees, drinking for fluid needs and chewing.
What I have learned. I have learned to meet caregivers where they are, to support them, provide information and education that they need and to never give up on them or their child. I have learned not to be attached to a specific philosophy or therapy strategy or judge therapists or caregivers. Every child is unique and different and what helps one child may not help another in the same way. My colleague likes to say we take of a bunch of unicorns, each one unique and special. We all bring different strengths and experience to the table with a united goal to help our young clients have the best quality of life possible.
Perhaps the timing must be right for the child and caregiver to make progress? And maybe most importantly, I learned of the importance of caregiver support, willingness, and acceptance of the therapeutic feeding plan. Once the caregivers expressed a strong desire to work on feeding diligently and consistently, this child began dramatic improvement! I also believe this was possible because he was in a place of good nutrition and growth including well managed GI issues.
I do believe this child is on his way to becoming a successful oral feeder.