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As i said, wanted to post somewhere about other programs that do not necessarily require your child to be there everyday.
I have already posted somewhere about Kennedy Krieger, Marcus Insitute (this is affiliate to KKI in Atlanta and the lists are really short there), St Josephs and St Marys.
A couple of feeding programs:
– mealtimenotions.com
Mealtime Notions LLC
PO 35432
Tucson, AZ 85740This program is run by Marsha Dunn Klein – she is extremely well respected in the feeding community. Her webpage is excellent and has a ton of info. Lori, she does do a ton of tube feeding. She has some books and videos at beyondplay.com.
– Kay A Toomey (she is in Denver). An infant from other forum just tube weaned (they started one year ago i think). She has individual + group sessions for babies
http://www.infantrefluxdisease.com/feeding_tips.php
This is a great article differentiating between aversions + picky eaters
The Obscure
“Eating” Disorders
Feeding Disorders and Picky Eating in Infants and ChildrenBy Abigail Natenshon, MA, LCSW, GCFP
Part One of a Three Article Series
Feeding problems are real; they are hard-wired and neurological. Their far-reaching effects are nutritional, interpersonal, behavioral and developmental, altering the sense of self and self-esteem, family relations, sociability, as well as academic and professional performance.
Identifying What You See
A strapping pre-school youngster demonstrates an extreme reaction to certain foods. Not tolerating textures in his mouth or smells in his environment, the aroma of certain foods hurts his nose and makes him so upset, he runs out of the kitchen. He spits out most foods, and typically gags, coughs or chokes during meals. Though he was growing normally, his mother fears he isn’t getting adequate nutrition from the limited foods he is eating. Their pediatrician has repeatedly told this mother not to worry, that her son’s height and weight were in the normal range. An older youngster with a similar problem goes all day at school without anything to eat because he cannot tolerate the smell of food in the cafeteria at lunch time. His food intake during the school day is limited to cakes and chips that he can easily eat on the playground. This same child heaves at the beach in response to the smell of seaweed on the shore.Feeding problems in children typically go undetected, and/or are mistaken for the more benign picky (preference) eating behaviors. Adding to the ambiguity of diagnosing these problems, by the time problem feeders reach adulthood, the diagnostic terminology describing feeding problems reverts back to being called “adult picky eating.” (see PickyEatingAdults.com). Problem feeders describe the one out of twenty children between the ages of birth and 10 who refuse to eat or who will only eat limited numbers of selected foods. A condition that is also called selective eating, perseverant feeding problems, or food neo-phobia is characterized by a strong fear of trying new foods, leaving its victims at risk for malnutrition and failure to grow normally. Problem feeders tend to demonstrate diverse clusters of traits, covering a spectrum of broader, more pervasive, neurologically-based dysfunction which compromises the person’s existence; these might include sensory integration disorder (SID), Asperger’s Disorder, Non-Verbal Learning Disability (NVLD), and/or Pervasive Developmental Disorder (PDD.) They typically demonstrate tactile and oral defensiveness and an overactive gag reflex. This is not the case with the more benign diagnosis of picky eating, refuting the notion that picky eating and problem feeders co-exist at different points along the same continuum. In the case of the pre-school child described above, a specialist ultimately discovered that this child’s brain had difficulty processing information received from his five senses.
In considering the spectrum of behaviors that co-exist with feeding problems, Asperger’s Disorder (AD), for example, is a syndrome linked with a variety of characteristics ranging from mild to severe. Overly sensitive to tastes, sounds, smells and sights, people with AD have a normal IQ and can display obsessive routines and skills, with interest and talent in specific areas. Because of their high degree of functionality and naiveté, these individuals are often perceived as being odd and eccentric, and are often victims of teasing and bullying. The individual with AD might show marked deficiencies in social skills, (they are often extremely literal and have difficulty using language in a social context) and have difficulties with transitions or changes, preferring sameness. They have a great deal of difficulty reading non-verbal cues (body language) and difficulty determining proper body space.
Dr. Kay Toomey, one of the nation’s leading specialists in treating problem feeders, is cofounder of Children’s Hospital Oral Feeding Clinic in Denver and is director of Colorado Pediatric Therapy and Feeding Specialists, Inc; she is best known for developing the multidiscipline Sequential, Oral, Sensory (SOS) Approach to Feeding. Toomey refutes the idea that eating is completely instinctual. She says that “instincts only start the process, and only then if they are not interfered with by premature birth or a physical disorder. Eating is, in reality, a learned behavior. Just as children learn to eat,, so children can be taught to not eat by the circumstances of their lives.” If the smell of oatmeal hurts a child’s nose, he believes that it will certainly hurt his mouth. In the SOS approach, the first step is figuring out how a child learned not to eat. (http://www.freep.com/news/health/picky11_20020611.htm). If children have a sensory integration disorder, it becomes difficult for them to understand and put together all the different pieces (requirements and functions) involved with the process of eating.
Problem feeders will cry and act out when presented with new foods and refuse entire categories of food textures. Picky eaters, by comparison, will tolerate new foods on the plate and will usually touch or taste a new food, eating as least one food from most food texture groups. Distinguishing problem feeders from picky eaters is not intended to negate the consequences of the picky eating syndrome, emotionally, nutritionally and interpersonally. The picky eater typically becomes conditioned to using food as a device to attract undue attention and exert undue control, in some cases distracting family members from dealing with other more relevant or highly volatile issues within the family system.
Picky eating disorders must be distinguished, too, from early childhood eating disorders (anorexia, bulimia and compulsive overeating/binge eating disorder). Unlike eating disorders, picky behaviors do not arise out of anxiety, obsessive compulsive disorder, or from negative role modeling of eating and exercise; in older children, teens and young adults, picky behaviors are not associated with distorted body image, fear of eating fat or becoming fat, or identity issues that characterize clinical eating disorders.
A medical doctor who is, and was, a picky eater as a child, recommends that parents of picky eaters “…do as my parents wisely did. Give the child a vitamin pill and let her grow out of it. Too much attention could make it worse and lead to an eating disorder.” Describing her continued preference today for sugary, fatty and bland foods, she still gravitates towards hotdogs, hamburgers, chicken nuggets, French fries, and ice cream and has only learned to eat vegetables as an adult. Her eating preferences have in no way compromised her daily existence or professional function.
Research bears out that picky eating as well as feeding disorders, like clinical eating disorders, are genetically based, with traits and propensities carried in the DNA. Physiological conditions that can affect feeding include cystic fibrosis, cerebral palsy, autism, low muscle tone and allergies, as well as sensory, oral-motor, gastro, cardiac, metabolic and genetic disorders. Another condition known as “burning mouth syndrome” the result of a dental procedure, may affect a person’s relationship with food, as does Arnold-Chiari Malformation, (ACM), where the brainstem, pressing on the top of the spine, compresses the nerve that regulates breathing, gagging, etc.
Though feeding problems may be based in “nature,” treatment and cure of these syndromes lies squarely within the bounds of “nurture,” assuming there is sufficient motivation and incentive to stimulate change.
OK – i won’t bore you anymore :-)… now that we hope we found our perfect program i am not going to do much more research on this for a while, so before i forget i wanted to put it somewhere!
Thanks Thais! I always appreciate new information. I’ll have to look through the websites you suggested.
Lori, what do you do for work? If you don’t mind me asking.
That’s awesome Lori. I bet that knowledge comes in handy with your own kids now and then.
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