This is my second post highlighting some of our kids and how we provide multidisciplinary intervention using a medical/nutritional/behavioral approach. I post this hoping it might give some treatment ideas to clinicians. There are many ways to treat feeding and swallowing difficulties, so my intention is not to promote a certain technique or method but only to provide ideas and generate good discussion from our experiences with children with complex feeding problems.
M.D.: 2 years old, (new feeding team eval): feeding difficulty with severe food refusal and oral aversion, prefers drinking.
- growing very well, speech delay, developmental delay.
- eating limited volumes of foods and prefers to drink (large volumes) over eat.
- Limited acceptance of fruit, meats and grains. Will not consume any vegetables.Grazes on foods throughout the day.
- GI: stooling well, no overt GI symptoms.
- Swallowing: no s/s of swallowing difficulty
Offered oatmeal and Cheerio but refuses, drinks 4 oz Pediasure mixed with whole milk (1:1) ratio
Snack: Offered breakfast at daycare, will only takes bites if he decides to eat
Lunch: at school. Refuses solids will consume all liquids provided. At home will eat yogurt or granola bar
Snack: Offered solids such as yogurt or raisins and cheese but might only take bites, Water
Dinner: Offered family dinner but refuses then given a preferred food such as yogurt
Beverages: 27 oz whole milk per day, 16 oz Pediasure per day, 3-4 oz juice per day, 8 oz water per day
M.D. was observed self-feeding goldfish using a vertical chewing pattern for 5-7 bites with intermittent sucking. Sucking increased with manipulation of the pretzel. He was offered home oatmeal with severe refusal behavior (turning away, crying).
Intervention: Therapist introduced a gentle behavioral feeding program starting with dry spoon. M.D. opened consistently for the dry spoon followed by reward of verbal praise and a turn on peek a boo barn app on IPAD. Therapist was able to transition from dry spoon, to tastes of applesauce on spoon, to full bites without gagging and good cooperation. Midway through feeding, M.D. began leaning toward the spoon in anticipation of the bite. Therapist then had Caregivers take over feeding with success. M.D. accepted 4 oz of applesauce puree using this technique with good bolus formation and transfer.
- Therapy for oral motor delay and aversion
- Home program was provided today. Start with offering meals of smooth purees in seat with distraction and caregiver feeding. Follow puree (6-8 oz) with soft chewables. Offer chewables at snack and daycare. As acceptance improves, remove distraction. Begin to introduce new flavors to expand diet to fruits, vegetables, and proteins.
- Discontinue Pediasure at this time. Recommend transition to 2% milk. Offer 4 oz at a time after or in between meals. Limit to 24 oz milk per day
- Recommend daily MVI, suggest Flintstones chewable
Thoughts: M.D. is being fed foods that are too hard for his oral skills , therefore is not eating much volume of food and he is drinking Pediasure to make up the calories. Some children drink over eating because of reflux and discomfort as the liquids can be soothing or they develop a strong preference for sweet drinks over food. M.D.’s weight was very good and he doesn’t need the extra calories so the Pediasure was eliminated. By taking M.D. back to purees or even mashed foods with some distraction, he was able to consume volume of a healthy food without any difficulty. Our team also recommended a meal time schedule that eliminates snacking on less healthy foods to ensure more hunger at meal time. M.D. would benefit from oral motor therapy to strengthen chewing skills.
L.W. 12 month old, History of severe IUGR, milk protein allergy, GERD, poor weight gain and associated feeding difficulties
- significant volume limiting, accepts 0-4 ounces at a time of Pure Amino or 0-4 ounces of stage 2 baby food.
- intake is inconsistent with poor caloric intake
- weight and length are beneath the growth curve. Head circumference is at the 18th percentile.
Breakfast – 4 ounces Pure Amino 30 cal/oz -usually 3 oz and then finished
Snack – 1- 4 oz of Gerber puree
Lunch – 4 ounces Pure Amino
Snack – 1- 4 oz of Gerber puree
Dinner – 4 ounces Pure Amino
Snack – 4 ounces Pure Amino
L.W. is getting and estimated 450-560 calories per day. There are some weeks when he has only in the 200’s.
Observation: L.W. was observed bottle feeding pur amino. He latched well with active sucking. pt used coordinated s/s/b pattern and accepted 3 oz in 5-7 minutes. There was no coughing or choking or s/s of aspiration. L.W. had strong vocal quality but was noted to have some congestion and gravely sound to his voice.
1) Continue Omeprazole.
2) Start bethanechol for delayed gastric emptying. Give this new medication 2 weeks to allow for increased volumes accepted from bottles. If volumes are not increased, start Periactin for appetite stimulation.
6) Monitor bowel movements, assuring 1-2 soft BMs daily.
7) Transition to Elecare Junior- vanilla (may taste better) but still an amino acid based formula.
8) Adjust formula recipe to decrease caloric density- mix 27 calories/ ounce (. Goal of 24-25 oz per day is his goal for catch up growth. Offer baby foods once per day .
Thoughts: L.W.’s main issue is poor weight gain and growth due to volume limiting on formula and puree. He is not getting enough calories to grow. He needs the elemental formula due to history of blood in his stool/milk protein allergy. Medical and nutritional management was recommended to improve motility and stimulate appetite. Caloric density of the formula was reduced slightly because some children calorie limit and 30 cal formula for this infant may be contributing to volume limiting. A different elemental formula was offered to see if taste is a factor. Coordination of s/s/b appeared functional but purees were decreased to once per day as formula will provide more calories/nutrition at the point.
J.B. 6 year old – Complex Medical History: with spina bifida, shunted hydrocephalus, pan-hypopituitarism, g-tube dependence, neurogenic bowel and bladder, port-a-cath, and long history of vomiting although this is under control now with medical management .
Progress: Inconsistent progress due to complex medical issues and hospitalizations. Recent wean of PPI resulted in J.B. refusing to eat. He is unable to wean off night feeds due to hypoglycemic issues. He has frequent periods of non oral eating due to hospitalizations/medical issues and periods of very poor interest and motivation to orally feed.
Medical and nutritional management: Continue daily enema, omeprazole , bethanechol for reflux/emptying 4 times daily, Continue Gabapentin for visceral hyperalgesia.
Feedings: G-tube: Continue night feeds. Add in small boluses of nourish during the day to take pressure off of oral feeding. Allow oral feeding at meals of preferred foods, soft solids, liquids with supervision.
Breakfast– soft solids- Mini muffins, 1 scrambled egg w cheese or oatmeal and 1/2 banana. Drinks gatorade, water
Lunch- meatballs (3-4 cocktail ), vienna sausages Or pureed chicken nuggets. Pears (pear fruit cup)-1/2 to all .
Dinner– cucumbers and tomatoes w ranch, will eat mashed potatoes and gravy as well. 1/2 cup spaghetti with meat sauce and butter.
He does not usually snack as eating takes so long/ so much effort and this would decrease the amount of nutrition at meals.
Gtube- 32 ml/hr overnight from 8p-6am ( 250 ml each nourish and pedialte)
Therapy: has focused on:
- Improving functional chewing skills with chewy tube practice, verbal and visual cueing, lateral placement of puree and solids, oral motor exercise.
- Drinking without difficulty (intermittent cough with swallow), has passed a swallow study. Increasing volume of liquids during the day.
- Enjoying oral feedings. At the last team visit, it was decided to begin small day tube feeds to give B.J. a break from orally eating if he is not interested.
- Maintain comfortable tube feeding support for caloric need.
Recent Therapy session: J.B. demonstrated his best session due to improved interest in eating which is attributed to a recent bowel clean out 2 days before session.
J.B. self fed and accepted: 10 bites of hamburger, 1 corn on the cob, 1 mini muffin, 4 cherry tomatoes and drank 1/2 oz of capri sun. He needed minimal cueing to eat toward the end of meal. Age appropriate bites of hamburger took average of 30-40 seconds to chew. Modifications were made by dicing hamburger into small pieces and adding gravy to soften and hold it together for chewing. B.J. had intermittent coughing on juice. He was switched to the bear straw cup and given targets to “drink to the bears nose” which encouraged him to take more volume. Thinner straw eliminated cough. J.B. used an improved rotary chewing pattern with occasional sucking with a-p transfer and swallow.
Thoughts: At the previous visit, Team and Mother discussed J.B.’s quality of life and the fact that he has consistently shown poor desire to eat with the exception of preference for fries. Team felt J.B. needed a break from therapy. Medical and nutritional support continues to be needed to assist with GI comfort and medical stability. At the last therapy session (after a break of 2 months) and a recent bowel clean out (needed due to constipation), J.B. demonstrated improved hunger and self fed age appropriate solids with minimal cueing. He enjoyed the food and used rotary chewing with good bolus manipulation. Plan was discussed to offer 2 meals per day, 4 hours apart, to maximize hunger and continue to use G-tube to maintain hydration and at night to prevent hypoglycemia. Encourage tasting of foods, non-pressure participation at meal time, and pleasure eating.
S.M. (new team eval) 4 y.o. : ex 28 week triplet premie with h/o CLD and is on night oxygen, h/o Nissen fundoplication, gastrostomy tube dependency, GERD and long standing feeding difficulties
- no reflux medications, tried them in the past but largely ineffective.
- frequent retching, no vomiting due to Nissen. Sweating, pain with eating and with stooling.
- poor tolerance of bolus feeds.
- daily soft stools but sometimes has urgency with mealtime and associated stiffening .
- BMI is at the 3rd percentile and it appears, from outside data points to have fallen in the past 2 months from the 50th.
Therapy Hx: participated in home based feeding therapy with poor progress. Has attended 2 intensive feeding programs, one out of the country which started S.M. eating a small amount of puree and then one in the U.S which increased acceptance of puree. Did not finish either program due to family relocating.
- Reported intake of 3-5 oz of puree that takes 60 minutes with refusals. Mother stated she is adding cereals to puree to increase texture.
24 Hour Intake:
- 5:30 am: 240 ml Nourish bolus
- 10 am: 3-5oz pureed food (try to reach 270 cals) – example: Chicken nuggets/ peas/ duocal. Olive oil
- Sips of water or milk
- 1pm: pureed 3-5 oz food-goal to reach 270 cals, sips of milk
- 7pm- 3-5 oz pureednfood- at least 270 cals, sips of milk, example: chicken breast, mashed potatoes, squash, adds butter, olive oil
- 9:30 pm G-tube nourish- whatever calories are missing (has not done that)
Observation and Intervention:
Speech observed mother feeding S.M. a few bites of puree. S.M. was positioned in the Rifton activity chair with an IPAD as distraction. Mother presented very small bites of yogurt via spoon. M.S. responded with reduced mouth opening taking a small amount of puree from the tip of the spoon. She took 3 bites this way.
Intervention: Speech (ST) fed starting with a dry spoon protocol. ST started with work on mouth opening for a dry spoon. ST presented a dry spoon to the top lip. ST waited for full mouth opening and noted retracted tongue position. Speech fed 3 bites of an empty spoon with placement on tongue with downward pressure. S.M. tolerated this well and began opening better for the spoon. Speech was able to transition from small tastes to full bites with good opening and acceptance. S.M. took 4 oz in 10 minutes without difficulty.
S.M. then demonstrated straw drinking with poor seal with difficulty expressing liquid. Speech presented an open medicine cup. S.M. was asked to self feed 5 mL volumes via med cup. S.M. picked up the cup and self fed 5 mLs for 2 cups of water and the 5 mLs of peptide 2x demonstrating consecutive swallowing. IPAD distraction and reward was used during session. There was no gagging, coughing, or choking was observed today.
- Start Neurontin (Gabapentin) for visceral hyperalgesia (hypersensitivity).
- Monitor bowel movements, assuring 1-2 soft stools daily.
- Improve nutrition status with goal for “catch up growth” of about 1200-1300 calories per day.
- Tube: Continue with the early am feeding, and include pm feeding of 240-270ml of the Nourish plus 30 ml water following these feeds (to flush the tube).
- During the day- continue with the blended feedings. Try to incorporate 2-3 food groups per meal with a goal of goal of 5-6 ounces. If she only takes 2 ounces, then give her 3 ounces of nourish. Team will assist in obtaining a Vitamix blender to make nice smooth blends.
- Therapy for oral motor delay and structured feeding acceptance.
Thoughts: S.M.’s main issues are poor weight gain and growth, tube dependence, and severe hypersensitivity with daily retching. Medical and nutritional strategies were recommended to decrease retching and improve nutritional status. S.M. responded surprisingly well to therapy techniques. Mother has been struggling to feed S.M. 4 oz with meals taking an hour. This was mainly due to poor mouth opening and tongue blocking. Speech started with a dry spoon program to work on “spoon technique” with practice opening for an empty spoon with proper tongue placement . Once S.M. mastered this, she was able to transition to tastes, small bites, and then full bites without difficulty. S.M. ate 4 oz in 10 minutes instead of 60 because she was accepting the bite! Speech recommended working on smooth puree and establishing better acceptance and volume BEFORE making it harder with addition of texture to the puree. Similarly, S.M. was struggling with straw drinking with poor lip seal and expression. However, when given an open cup with 2-3 mL of liquid, she was able to self feed taking consecutive swallows from the cup. Straw drinking skills will be addressed in therapy but at this point, S.M. demonstrated good ability to drink from an open cup with small volumes. Her response in therapy shows promise to transition off of the feeding tube .
Hi Kristi. I am working with a 26 month old who has been largely on TPN. He has some developmental delays but is very interactive. He can be distracted for a little bit to accept some liquids from a small medicine cup abd recently started accepting pureed from a spoon recently (about 8 small 1/2 tsp bites). Do you recommend continuing with open cup or do you recommend a sippy cup? I notice that his tongue moves around a lot and his lips stay somewhat open when accepting the liquids (he does lean forward multiple times to drink).