SOS - Signals Help for Sensory Oral Feeding and Swallowing Problems!!

Every parent dreams of a moment when they will be joyfully holding their child and that child is snuggled in their arms nursing or feeding happily and eagerly. Feeding your child will be easy, fun and enjoyable. While all parents have moments when their child does not always like what they offer them at mealtime or they spit up after a nursing or bottle feeding; these are rare exceptions and not interfering to their family life. But, this is not so for the parent of a child who has feeding and swallowing difficulties. The emotions are very high with the parent who cannot meet their child’s nutritional needs despite all the different formulas, nipples, cups and home-made food they have tried. Nothing is working and the question is why.

Why is my child vomiting after each meal? Why is my child able to start to eat fine and then after a few minutes into mealtime he/she stops eating and starts crying? Why is my child able to chew on a plastic toy but not on food? These are the questions that many families with a child diagnosed with Kabuki Syndrome can relate to and face daily...feeding and swallowing skills are complex. Eight muscles are required for us to chew and all of our four senses are used for eating; sight, sound, taste and small.

As a Pediatric Speech-Language Pathologist, I have specialized in the area of evaluating and treating children with feeding and swallowing disorders for over 24 years. I have worked with only one child, that I was aware of, that was diagnosed with Kabuki Syndrome. Her family’s journey with her feeding difficulties is not unlike many other families who have children with low oral muscle tone, gastric esophageal refluxi and sensory oral sensitivities. I worked with her and her family for almost a year before we discovered her medical diagnosis. Despite the unknown, they still needed to know how to feed their daughter and how to help her progress developmentally.

The focus of this article is to define the medical professionals who may be players in the evaluation and treatment for a child who is displaying feeding and swallowing difficulties; the therapies and tests to consider and finally provide some helpful tools to use with your child. This is not an exhausted list of the professionals or individuals who assist in this area, however, it is important to understand that each of the professionals that you consult with are to work as a team.

The first player in the game is either your child’s Pediatrician or Family Practice Physician who is the primary medical specialist for your child’s overall health and well being. They are generally driving the train with you to refer to specialists if needed and caring for your child’s overall health and development. He/she could then refer your child to the following specialists: Gastroenterologist, Endocrinologist, Speech-Language Pathologist, Occupational Therapist, Physical Therapist, Nutritionist and Dietician.

A Gastroenterologist is the physician who specializes in the diagnosis and treatment of disorders of the gastrointestinal tract including the esophagus, stomach, small intestine, large intestine, pancreas, liver and gall bladder. Individuals with Kabuki Syndrome can often experience chronic constipation, gastric reflux and difficulties maintaining oral intake. The specialists are the ones who manage the alternative feeding tubes; such as a nasogastric and gastric tube.

An Endocrinologist is the physician who specializes in the diagnosis and treatment of diseases of the endocrinei system/; such as diabetes and growth disorders. Children with Kabuki Syndrome are at risk for hypoglycemiai, growth hormone deficiency, hypothyroidism and/or adolescent obesity.

A Speech-Language Pathologist is a specialist who evaluates and treats communication disorders and feeding/swallowing problems. Speech-Language Pathologists can perform clinical feeding/swallowing assessments, as well as swallow studies with the radiologist, called either Oral Pharyngeal Motility Swallow studies, Barium Swallow studies or Video Fluoroscopic Swallow studies. The name of this objective swallow test can vary from area to area.

During a swallow study, a patient swallows a variety of liquids and foods mixed with barium, as a radiologist takes video x-rays of the mouth and throat. These images show how food passes from the mouth through the throat and into the esophagus. They may also reveal aspirationi - foreign matter entering the lungs - if barium enters the windpipe.Aspiration puts patients at risk for lung infections. (Answers.com, “References and Answers”, Dictionary of Medical Professionals, http://www.answers.com.)

An Occupational Therapist is another specialist who can valuate feeding and swallowing difficulties. They also are the experts on sensory integration, self-feeding skills and providing recommendations for adaptive equipment and utensils. Depending upon your area, either a Speech-Language Pathologist or an Occupational Therapist will be the specialist that your primary physician will refer your child to for a complete feeding and swallowing evaluation and treatment, if needed.

The Nutritionist and Dietician are the professionals trained to assist in evaluating and guiding the family regarding calorie intake, developing a well-balanced diet, assisting with tube feeding caloric intake and supporting the overall health of the child who is displaying feeding and swallowing difficulties.

A Physical Therapist is the professional that can assist the muscle tone and positioning issues, gross motor delays and to evaluate your child for a special adaptive seating system.

As a Parent you may find yourself the manager of this complex problem. In some cases, you may be fortunate to have a person who acts as a case manager, to assist you in this maze of medical and therapeutic appointments. There are numerous therapeutic approaches to assist children with feeding and swallowing disorders. Some involve oral motor exercises to promote improved oral muscle tone and/or coordination. Other programs may be very structured and systematic if the focus is reducing some of the sensory sensitivities (i.e., tactile defensiveness, gagging at the sight of certain foods, specific texture refusals) and coping behaviors surrounding food.

For example, there is the Sensory Oral Sequential Feeding Program developed by Dr. Kay Toomey and associated located in Colorado where they take a very systematic approach to assisting children that have sensory oral feeding aversions and help them approach new foods and/or undesirable foods in a safe and fun way.

It has been developed over the course of 17 years through the clinical work of Dr. Toomey, in conjunction with colleagues from several different disciplines including: Pediatricians, Occupational Therapists, Registered Dieticians and Speech Pathologists/Therapists. This program integrates sensory, motor, oral, behavioral/learning, medical and nutritional factors and approaches in order to comprehensively evaluate and manage children with feeding/growth problems. It is based on, and grounded philosophically in, the “normal” developmental steps, stages and skills of feeding found in typically developing children (Educations Resources, Inc., “Picky Eaters Versus Problem Eaters”, The SOS Approach to Feeding, http://www.educationresourcesinc.com, 3/14/2010).

Another approach is the Applied Behavioral Analysis approach to eliminate negative food refusal/aversions that a child can develop to cope around foods that they associate with pain or discomfort. Generally, Behavioral Psychologists are on the feeding teams when using this applied behavior analysis approach. Each program has its specific purpose and therefore, whichever approach is used it is important that your child be evaluated by a skilled feeding and swallowing specialist, and that the therapeutic techniques and goals have been individually developed for your child’s unique needs, strength and weaknesses.

There are several different types of nipples, bottles, cups, utensils and oral motor stimulation devices on the market today and there are new ones always being introduced everyday. It is the job of the Feeding and Swallowing Specialist to keep up with this as this is their speciality. In my own practice I have found the following to be helpful with children that have some of the unique feeding difficulties that are shared with Kabuki Syndrome: 1) When a child has difficulties latching onto the nipple, an orthopedic nipple can be helpful since it gives more oral awareness for the baby to assist with latching on; 2) If the child does not demonstrate a tongue groove posture to anchor the nipple then a firm, cylinder-shaped nipple is useful; 3) Several specialized nursing devices for children with cleft palates are on the market such as the Haberman Feeder and the Pigeon; 4) Using a flat plastic spoon such as the maroon spoon, can assist with beginning spoon feeding with a child that has difficulties with lip closure and retraction movement; 5) Use of an Ark probe or a chewy tool can assist in promoting chewing and/or rotary jaw movement.

In closing, I hope that this article has been useful for families with a child who has been diagnosed with Kabuki Syndrome and feeding and/or swallowing difficulties. The information is intended to assist you in your incredible journey with your child and to bring some of the joy back to mealtime. For further questions you may contact me at linda.lane@choa.org.