Down Syndrome: Mealtimes with Your Child

The pleasure watching a child enjoying a favorite meal or birthday cake is familiar to all. Meals are a time for you to insure your child’s proper nutrition to promote health and development and a time for the whole family to share and connect with each other. However, it is not uncommon for mealtime to occasionally be a source of stress and frustration for parents and children alike. For children with Down syndrome, there may be additional circumstances that lead to more challenges with eating and swallowing. There are a variety of ways to improve the skills needed to safely enjoy mealtimes.

Children with Down syndrome may have similar patterns of oral motor challenges, attributable to a seemingly small mouth in contrast to a larger tongue (occasionally macroglossia), their underlying hypotonia, and tongue protrusion. Children with Down syndrome are predisposed to respiratory, cardiac and gastrointestinal problems in many cases, and these issues can greatly impact eating.

Feeding and Mealtimes: Stages

Infants

Infants with Down syndrome may have difficulty latching on to the nipple and initiating a strong suck pattern due to hypotonia. For children with respiratory and cardiac issues, it may be difficult to coordinate the suck-swallow-breathe process for feeding. If breastfeeding is difficult initially, mothers may want to give their infants expressed milk through a bottle or a supplementer, like a syringe or gavage, while the infant improves his latch and sucking for breastfeeding effectively. Proper positioning, special bottles if a bottle is being used, and some oral-stimulation techniques may be helpful for these infants.

Respiratory and cardiac issues often reduce a child’s stamina and if feeding takes more than thirty minutes, the baby may tire easily and be expending more calories than he is taking in. When a breastfeeding infant is not gaining sufficient weight, a mother may consider partial supplementation with formula or additional expressed breast milk. This can be done by bottle or a nursing supplementer so the infant can continue to breastfeed.

If the infant tends to sleep through feeding times or is difficult to rouse, feeding only on demand may be inadequate for his caloric and nutritional needs and stimulation of the mother’s milk supply. An infant may need to be awakened for breast or bottle feeding. If the infant falls back asleep without taking an adequate amount of milk, arousal techniques such as opening clothing, gentle movements such as tickling feet or stroking cheeks, talking, or patting may help the infant.

Lactation consultants, occupational therapists, speech therapists, and breastfeeding support groups often have valuable resources and with the guidance of the pediatrician will advise you regarding the safest and most appropriate feeding method for your baby.

Older Babies

As your child progresses toward sitting up and begins to show an interest in what you are eating, you look forward to introducing food. Introducing purees and later food with more texture or table foods may result in the child not accepting the food. Babies must learn to coordinate tongue and jaw movements and if he has a habit of protruding his tongue this may add to the problem of food being pushed back out. To address this:

  • Consider if the baby is really ready for solids; you may want to try again in another month.
  • Check positioning. The best position is sitting upright, with his legs, head, back, and feet supported.
  • Start with small spoonfuls of food so that the child can learn to control tongue and jaw movements.
  • If he thrusts his jaw or tongue forward, present the spoon firmly on the center-front of his tongue with gentle pressure. Resist scraping the spoon off on the child’s upper lip and let him clear the spoon himself.
  • Let your baby lead the mealtime by respecting what he communicates. Has he finished his bite before you offer another? Is he turning his head away or leaning in toward you with an open mouth?

Toddlers

Your pediatrician may tell you to avoid certain foods, which may cause choking, until your child is one or two years of age. Because there may be a delay in mastering certain oral-motor skills, children with Down syndrome often need to be cautious with these foods until age five or beyond. If your child is not consistently using a mature rotary chew it is best not to offer these foods:

  • Nuts
  • Seeds
  • Popcorn
  • Raisins
  • Hard candies
  • Raw carrot sticks
  • Chips
  • Hot dogs
  • Whole grapes
  • Large pieces of meat

There are several techniques you can use to help your child develop more mature eating skills:

  • Offer several choices of finger foods at each meal
  • If your child shows a preference for chewing on one side of his mouth, place food on the opposite side whenever possible
  • To encourage his rotary chewing, place small dabs of yogurt or similar food in the corners of his mouth to lick off so that his tongue can learn to move side-to-side.
  • Offer food such as bread or cheese sticks at the molar level to encourage the child to chew with the molars and develop a rotary chew.
  • When beginning with an open cup, start with thicker liquids which move more slowly and are easier to control (e.g. fruit smoothie, drinkable yogurt).

When to Seek Help

If at any stage you feel your child is not able to progress with eating, contact your pediatrician or gastroenterologist to discuss your concerns. You may be referred to early interventionists specializing in feeding such as occupational therapists, speech and language pathologists, or nutritionists. Interventionists should be experienced and/or credentialed in working with children with feeding issues. Your child may need help if he:

  • continues to resist eating
  • will only eat certain foods or textures and nothing else
  • is not gaining weight appropriately
  • frequently coughs or chokes on foods or liquids
  • has frequent, unexplained fevers or pneumonia (signs of aspiration).

Mealtimes are about more than nutrition or developmental skills; mealtimes are a family time. Make the most of every mealtime to enjoy building family relationships through discussing the day’s activities, sharing the joys and challenges of everyday life, and appreciate the moments of being together.

References:

Satter, E. How to Get Your Kid to Eat… But Not Too Much. Bull Publishing, 1987.

Saenz M.D., Rebecca, B. Primary Care of Infants and Young Children with Down Syndrome. University of Mississippi Medical Center, Jackson, Mississippi American Family Physician

Medlen R.D., Joan E.From Milk to Table Foods: A Parent’s Guide to Introducing Food Textures. Disability SolutionsJanuary/February, 1999 Volume 3, Issue 3, p. 1, 3-9.

Developmental Patterns of a Child with Down Syndrome

Every child is unique and develops at his or her own pace. This is especially true of children with Down syndrome whose rate of development is even more variable. Every time you take your child to the pediatrician, the doctor checks to see how your child is doing in the areas of intellectual, social-emotional, communication, and motor development.

Instead of focusing on a particular developmental milestone, attention is paid to the overall pattern of development reflecting the child’s strengths and areas of need. Intellectual delays are usually mild to moderate. (IQ or score achieved on an intelligence test identifies learning potential within the 70–40 range.) Children with Down syndrome tend to have higher abilities in the areas of social and adaptive skills.

Early Intervention to Improve Development

The first years of every child’s life are a critical time for optimal development. Early intervention can maximize each child’s potential. People who help with early intervention include:

  • Early childhood educators
  • Health care professionals
  • Occupational therapists
  • Physical therapists
  • Speech and language pathologists
  • Social workers

Other specialists are involved as needed. The goal of early intervention is to build on a child’s strengths to facilitate further development and to prevent patterns of development that could lead to orthopedic or emotional or behavioral difficulties.

Language and social skills. Children with Down syndrome develop language skills at a slower rate than many children. Some children with Down syndrome also have to deal with some structural problems, such as limited tongue movement, that may interfere with early sucking, swallowing, and eating. Therefore, children with Down syndrome benefit from early help with eating. This will prepare them for speech and language development.

These early skills are called oral-motor skills. Both occupational and speech and language pathologists can help your child with the movement and cognitive skills needed to acquire language. These early interventions with oral-motor skills and early language can set the stage for your child to interact cognitively, emotionally, and behaviorally with other children. You may be encouraged to try oral communication methods, combining speech with simple signs, to further your child’s communication efforts.

Movement development. Many infants with Down syndrome appear to be floppy or have looseness of the muscles and joints, making it harder for them to move freely, roll, sit, stand, and eventually, to walk. The floppiness is called hypotonicity. Some of the floppiness is related to excessive joint hypermobility and ligament laxity.

Children with Down syndrome may appear weak and unable to initiate typical infant movements, such as kicking and reaching. But early intervention by physical and occupational therapists will help a child learn to gain head control, roll, sit, stand, and walk. Each child with Down syndrome will move through the developmental stages at his or her own pace, but therapy will provide the encouragement for children to actively engage in gross motor activities.

Early therapeutic activity decreases the chance of developing orthopedic problems that could interfere with movement later in life. The therapists work with each child individually and in group activities to develop motor control through play and some focused exercises. Learning through gross motor play can also improve aspects of your child’s cognitive skills, such as the ability to focus, develop persistence, get a sense of cause and effect, and explore or develop curiosity.

Parents and extended family members are a very important part of each child’s early intervention activities and programs. Speech and language and physical and occupational therapists, as well as learning specialists, will work with both you and your child so the exercises or activities are fun and effective when incorporated into daily life.

An Introduction to Down Syndrome

Down syndrome is a genetic variation that affects one out of 800 to 1,000 babies born in the United States. More than 350,000 people live with Down syndrome in the United States. Although all children are unique in their patterns of development, children born with Down syndrome learn differently. They have more variations in their intellectual, language, and movement development.

Symptoms of Down Syndrome

The symptoms of Down syndrome can vary a great deal. However, these are some of most common symptoms of Down syndrome:

  • Decreased muscle tone and loose joints
  • Upward slant of the eyes
  • Flattened face
  • Depressed nasal bridge with smaller nose
  • Mental retardation
  • Small mouth
  • Abnormally-shaped ears

Some children with Down syndrome also have visual, hearing, heart, and gastrointestinal problems. Many of these can now be corrected through medical interventions. With appropriate medical care, early intervention, education, and support throughout their lives, many adults with Down syndrome enjoy meaningful work and recreational opportunities. They may even live independently within the community.

The Genetics of Down Syndrome

The first comprehensive description of children with Down syndrome was published in 1866 by John Langdon Down, MD. His description still guides doctors who often make the clinical diagnosis shortly after birth. Because there is considerable variation in physical characteristics among children with Down syndrome, doctors confirm the diagnosis with genetic or chromosomal testing.

The genetic basis of Down syndrome was identified in 1959 by Jerome Lejeune and colleagues who found that Down syndrome was due to triplication of the 21st chromosome.

We are born with 46 chromosomes. Half are contributed by the mother and half contributed by the father, to equal 23 pairs. In Down syndrome, though, there are 47 chromosomes with an extra, or third, copy of chromosome 21, instead of two. This is why the scientific term for Down syndrome is “Trisomy 21.”

Today, through a blood test, physicians look at the karyotype to look for genetic abnormalities. A karotype is created by staining the chromosomes with dye and photographing them through a microscope.

AS Science for Public Understanding

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http://www.scpub.org/data//files/humkarrev-9739.pdf