I want to share some simple ideas for assessing children with feeding disorders, specifically toddlers with feeding difficulty, g-tube dependence, or food refusal/ extreme picky eating and prioritizing intervention. Think about the whole child when assessing.
- The oral motor pattern is the last thing you should address(I realize this is the opposite of what most of us have been taught.)
- For many children, the oral motor delay or the immature pattern is partially related to the fact that the child doesn’t practice eating (along with low tone, gagging, etc). So the next question is why don’t they want to eat?
- Look at why the child is stuck or having trouble progressing with their feeding skills.
- There are many reasons kids get stuck in their feeding patterns but some of the most common reasons are gastroesophageal reflux, constipation, food intolerance/allergy or respiratory issues (most prevalent in infants). If it hurts or is too much work to eat a child will stop eating.
- Work with the referring doctor to treat these underlying issues to help the child feel better or refer them to a multidisciplinary feeding team where the child can get medical and nutritional management to help them feel better.
- If the child feels better- they will respond better to your therapeutic techniques.2. Nutrition and weight gain is the most important part of the feeding program.
- If a child is having difficulty gaining weight or failing to thrive, this should be an important part of the feeding program if not the main focus.
- Good nutrition and weight gain is important for cognitive development. It also allows the child energy for therapy and motor skill development.
- Never compromise weight gain when working on a feeding program!
3. Start intervention at a level the child can be successful.
- For many of our kids, the place they will be successful is without food- opening for a spoon, sitting in a highchair, or having a spoon touch their lips.
- Don’t start therapy with work on age appropriate oral motor skills. Start developmentally at a level the child can be successful.
- Then-build on that moving through developmental stages toward what is age appropriate.
- Use behavior reinforcement strategies to get acceptance or sensory strategies to improve tolerance.
K.D. came to us at age 3 with g-tube dependence for all nutrition. At home, she was offered oral foods but would only take 1-3 bites of baby food and might put her teeth on a cracker but would not bite it. Home therapy was working on chewing.
KD had a history of gastroesophageal reflux, slow gastric emptying in the past, and poor weight gain which is why she received the g-tube at age 1. After the tube was placed, she stopped orally eating. Her feeding schedule included bolus feedings of a 1.5 formula 4x/day (1.5 formula meals it is 45 calories/ounce). She has gagging, GERD/vomiting, constipation, food refusal, and oral motor delay.
This is actually a fairly common scenario… but Where to start?
- Why is KD stuck on a feeding tube and refusing all oral food?
The most obvious answer is because she is not comfortable in her gut making it impossible for her to learn to eat. She has some obvious signs of gut discomfort which include her gagging and oral hypersensitivity, GERD/vomiting, food refusal, and constipation. All of these things tell her when her stomach is full she doesn’t feel good or when she puts food in her mouth, she gags and feels like she will throw up.
So the place to start is to help her feel better. The medical management on our feeding team is done by pediatric GI nurse practitioners and the nutritional changes are managed by dieticians. They help us adjust medicines, formula, and rate to get gut comfort. More on that in another post! For KD, they increased her PPI , improved stooling, and discussed other medicines that my help her stop gagging and vomiting.
- What is the status of KD’s Nutrition and Weight Gain
KD continues to have poor weight gain despite being tube fed. This is always a concern but it appears that KD is not getting enough calories for good weight gain due to vomiting and poor tolerance for volume. Our dieticians calculate the amount of calories needed for weight gain and catch up growth. They also help with gut comfort by recommending formulas that are predigested that can help to decrease reflux and improve stooling patterns. Fo KD, they changed her formula to from Boost Kids Essentials 1.5 to Pediasure Peptide 1.5. Peptide is made from hydrolyzed whey. Because it is partially broken down it may help reduce reflux and promote stooling.
- Start at a level the child can have success in therapy.
KD has very little oral intake, basically none. For many children with feeding problems, the place they can be successful is with acceptance of a dry or empty spoon. We started therapy with a “dry spoon program” by asking KD to take a spoon in her mouth like a pretend bite that was followed by a reward of 20 seconds of play. Then another dry spoon was presented. At first she didn’t want to accept the whole spoon with lip closure but as we practiced it became easier and she got better. We were then able to move her from dry spoon to tastes on the spoon called a dip spoon, to small bites. In the first session, she took 4 oz of puree! She had some gagging and grimacing during the process but it lessened throughout the feeding. We also expect this to get better with medicines and a new formula.
KD has been in feeding therapy for 2 years with very little improvement in oral feeding. I believe this is because her GI issues were not adequately managed and therapy focused on chewing and eating solids which was too hard for her. If the goal is oral feeding and the child is g-tube dependent and has little experience with oral feeding, then the focus needs to be on acceptance of purees and high calorie liquids.
The rationale is this- It easier for a child who has limited practice eating to learn to accept volume of puree and liquids without also having to chew. Eating needs to be easy for awhile. Chewing takes months if not years to fully mature in strength and coordination. It is very hard if not impossible to get a child off of a feeding tube by focusing solely on chewing.
Outcome: we have seen KD twice in our feeding clinic-she is not vomiting, stooling daily, gaining weight and she is eating 4-6 oz of puree three times per day. Her next goal is to learn to drink 1-2 oz of the high calorie formula. Her parents are very excited about her progress!