Managing Feeding Issues in Individuals with Cornelia de Lange Syndrome

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Managing Feeding Issues in Individuals with
Cornelia de Lange Syndrome

• Cheri S. Carrico, Ph. D., CCC-SLP
• CdLS World Federation, Scientific Advisory
  Council
• USA CdLS Foundation, Clinical Advisory Board
• Elmhurst College, Professor
• Director, Speech-Language-Hearing Clinic
• Niagara Falls, Ontario, Canada
• July, 2007

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Physiological Concerns that Impact Oral Feeding

• Gastroesophageal reflux disease (GERD)
• Tube feeding
• Micrognathia (small jawcan put tongue in a
  retracted position)
• Choking
• Coughing
• Gagging
• Vomiting
• Aspiration

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Associated Health Concerns(may or may not be
related to feeding)

• Fevers
• Allergies
• Lactose intolerance
• Cleft palate

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Upper Respiratory Concerns in Children with
Feeding Difficulties

• Colds
• Sinusitis
• Ear Infections
• Pneumonia
• (all of which are possibly associated with GERD)

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Oral Feeding Difficulties

• Sucking
• Biting
• Chewing
• Swallowing
• Micrognathia
• Oral defensiveness

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Concerns Related to Social/ Emotional Factors

• Fear of feeding
• Food aversions
• Refuse to eat certain foods/limited food choices
• Spit out food
• Slow eaters
• Messy eaters
• Picky eaters
• Make unhappy faces or cry during meals
• Meals can be an unpleasant experience

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Selective Eating Habits

• Consume a limited variety of foods
• Consume only certain textures
• Consume only certain flavors or tastes
• Consume only specific temperatures
• Consume only a small amount of food
• Eat only tiny bites of food
• Stuff food in their mouths

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Poor Transitions

• Difficulty moving from bottle to cup drinking
• Difficulty moving from liquids to soft solid
  foods
• Difficulty moving from soft foods to firmer
  solids
• Selective feeding habits
• Care givers often are frustrated

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Concerns Most Frequently Reported by Care Givers

• How to transition to oral feeding
• Eating solid foods
• Eating a variety of textures
• Developing healthy eating habits
• Developing appropriate feeding techniques

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Provide Non-nutritive StimulationWhen Oral
Feeding is Not Yet Safe

• Utilize play based oral stimulation
• Teething rings
• Teething books
• Pacifiers
• Fingers
• Lil dippers (available from Gerber)
• Mesh feeding bags
• Toys
• Refrigeration tubing
• Wash cloths (dry, wet, frozen)

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Provide Safe Oral Stimulation

• Begin in small steps
• Add small amounts of liquids/flavors to toys,
  pacifiers,
• wash cloths, fingers, etc.
• Add small amounts of soft solids to toys,
  pacifiers,
• wash cloths, fingers, etc.
• Use mesh feeding bags
• Use Gerber lil dippers

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Transitioning to Oral Feeding

• Make certain oral feeding is safe
• Obtain medical approval
• Provide early oral stimulation
• (especially in individuals who are tube fed)
• variety of tastes
• variety of textures
• variety of temperatures
• Make oral stimulation fun!

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Eating Solid Foods

• Provide solids as early as possible
• especially in individuals who are tube fed
• Progress in small steps
• Gradually increase firmness
• Experiment with a variety of textures
• Experiment with a variety of tastes
• Experiment with a variety of temperatures
• Dont be afraid to try!!
• Have fun!!

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Stimulate with a Variety of Tastes

• Sweet
• Sour
• Salty
• Spicy
• Bland

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Stimulate With a Variety of Textures

• Smooth Bumpy
• Soft Hard
• Crunchy Squishy
• Cloth Flexible

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Stimulate With a Variety of Temperatures

• Room temperature
• Warm
• Cold
• Frozen

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Provide Deep Touch Stimulation

• Firm touch to the
• lips
• area above the lips
• cheeks
• chin
• tongue
• Move strokes toward the direction of the lips
• Also tap in a circular fashion
• Strengthens muscles
• Decreases oral defensiveness

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Potential Feeding Solutions

• Try different thicknesses
• -thickened liquids and semi-solids
• may be easiest to swallow
• -thicken liquids with
• baby cereal
• baby food
• applesauce
• yogurt
• commercially available thickeners
• oatmeal/hot cereal mixes
• -gradually increase or decrease thickness
• until comfortably and safely tolerated

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When thickened foods are tolerated

• Add small, soft pieces of food
• Pasta
• Rice
• Potatoes
• Soft cooked vegetables
• Soft fruits (e.g., bananas, berries)
• Gradually increase the number of pieces
• Gradually increase the firmness of the pieces

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Move to Firmer Foods

• Cookies (soft)
• Cereal
• Bread Crust/Soft Bread Sticks
• Medium Cooked Vegetables

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Move to Firm Solids

• Meat
• Carrots
• Apples
• Pretzels
• Teething biscuits
• Crackers
• Cookies
• Granola bars
• Licorice sticks

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Safety Precautions

• ALWAYS have medical clearance to feed orally
  (oral feeding can be dangerous because of the
  associated risks)
• Rule out any food allergies
• Rule out aspiration
• Proceed slowly and gradually

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Respect Preferences

• Bland foods
• Most common preference among children with food
  aversions
• Sweet foods
• Salty foods
• Spicy foods
• Gradually encourage other preferences
• Eating should be pleasurable, satisfying, and
  social
• Have fun!

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Thank you

• Organizers of the conference, especially
  Bernadette!
• Miriam Foundation
• World CdLS Federation
• USA Cornelia de Lange Syndrome Foundation
• Families
• All who care about individuals with CdLS