Rare condition gets new treatment

We do it every day, hundreds of times a day. The simple act of swallowing takes about 50 pairs of muscles and nerves, and for some children it's something they just can't do.

Now these kids are getting the help they need, without even leaving their own high chairs.

Mealtime has never looked so good to Elizabeth Rynd. For the first two years of Andrew’s life, he never ate a single meal. Andrew was born with a rare condition; milk would go into his lung, and he couldn't cough it out. He didn't know how to chew or swallow.

That's where the one-of-a-kind E-Feed program comes in. It allows children like Andrew to get help-via the internet, from an entire team of specialists.

For thousands of children eating does not come naturally. For kids with cerebral palsy, autism, cleft palet and even behavioral problems, programs like E-Feed can help.

On this day, an occupational therapist, speech pathologist, nurse practioner and physical therapist in New Jersey are joining Fin Nowell and his mom for lunch in Utah.

Fin was born at just 23 weeks; his ability to swallow never developed. Since starting the program last year, Fin no longer relies on his feeding tube completely.

Melissa Nowell, Fin's mom, talks about the day that he no longer needs a feeding tube. "It was great today, because we feel like we are moving on to the next step which is putting some chewable onto his teeth."

Opening his world, and others, to new foods, tastes and sensations. Now Andrew can also enjoy his favorite foods.

E-Feed can be used for initial screenings for out of state families to see if their child is a candidate for an intense four week therapy program at the pediatric feeding and swallowing center.

E-Feed is also used for follow-ups for out of state families who've completed that therapy.


WHO DOES FEEDING AND SWALLOWING PROBLEMS AFFECT? Feeding issues affect 25 to 45 percent of children from newborns to adolescents. Approximately 80 percent of children with developmental disabilities have a feeding problem. (SOURCE: www.feedingcenter.org)
· Birth and genetic defects
· Gastrointestinal defects
· Infection/inflammation
· Premature births
· Developmental disabilities
· Prolonged subsistence on one food
· Oral motor difficulties
· Difficulty with solid foods or table foods (i.e. gagging, spitting out, vomiting)
· Feeding/Swallowing difficulties secondary to neurological impairment
· Difficulty sucking
· Picky eaters
· Coughing or choking with feeding
· Recurrent respiratory infections
· Changes in breathing patterns with oral feeding
· Hyper/Hypo sensitivity
· 1-3 months during breastfeeding, sucking and swallowing should be rhythmical and coordinated
· 6 months- able to accept and swallow pureed foods
· 9 months- upper lip is used to remove food from spoon; mashed table food can be introduced
· 12 months- can bite and chew a soft cookie; typically able to tolerate soft finger foods and mashed table food
· 18 months- able to drink from a cup with assistance, still with some spillage; experience a variety of tastes and textures
· 24 months- can chew most table foods easily; can drink from a cup or straw
TREATMENT: If left untreated, it can lead to malnutrition, dehydration and respiratory problems. Treatment is done by encouraging children to accept and swallow new foods or textures along with increasing the child's oral motor skills. This is achieved through observed feeding sessions. It may also include specific swallowing exercises to improve muscle movement or function.
(SOURCE: www.bhc.org and www.feedingcenter.org ) * For More Information, Contact:

Nancy Collins, Director PR/Marketing, (973)754 -4500 collinsn@sjhmc.org .

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