Frequently Asked Questions About Feeding Disorders
What is a feeding disorder?
Feeding disorders affect approximately 25-40% of children and up to approximately 80% of children with developmental disabilities have a feeding problem. A feeding disorder can include problems such as food refusal, selectivity, inability to consume adequate calories, or an inability to consume an age appropriate diet due to skill, sensory medical and/or behavioral difficulties.
Some medical diagnoses and underlying conditions, which can lead to feeding issues, include, but are not limited to:
- Cardiac Conditions
- Cerebral Palsy
- Cranio-Facial anomalies
- Cystic Fibrosis
- Failure To Thrive
- Food Allergies
- Gastroesophageal Motility Disorders
- Gastrointestinal Pain
- Gastroesophageal Reflux
- Genetic Syndromes
- Human Immune Deficiency Virus
- Pulmonary conditions
- Reactive Airway Disease
- Metabolic Disorders
- Oral-Motor Dysfunction
- Short Bowel Syndrome
- Status Post Organ Transplant
The feeding program at St. Mary's Center for Children offers a unique transdisciplinary treatment model (TR-eat®).
How will you address my child's feeding difficulty?
A team of specialists works with each child and family. The program takes a supportive, comprehensive approach that not only incorporates a child's medical and developmental needs, but addresses nutritional, behavioral and oral-motor feeding issues as well as family education and training. Each child's treatment follows an individualized treatment plan, which is communicated to the child's primary care physician and/or pediatric subspecialist.
How do I get started?
An appointment is the first step in having your child seen by the feeding treatment team at St. Mary's Center for Children. This process is initiated by a referral by your child's primary care physician and/or pediatric subspecialist. Physician offices can download the Center for Children's referral form and fax it to (812) 485-7678. They can also make a referral by calling (812) 485-7425 or (877) 589-9858.
Who will I see at the initial visit?
The Feeding Program follows a transdisciplinary treatment model. The first appointment will include an assessment by a Licensed Clinical Psychologist, occupational and/or speech therapist and a Registered Dietician. Input from additional pediatric specialists will be coordinated through your child's primary care physician or directly if your child is currently under their medical care.
What do I bring to the visit and how long is it?
Clinic visits last for approximately two hours in most cases. We usually attempt to observe the child eating during the visit, so we ask the family to bring food for the feeding observation. It is recommended that you bring 1 - 2 foods your child will typically eat and 1 - 2 foods you are having difficulty getting them to eat. If your child is currently not taking anything by mouth, please bring their tube fed formula with you.
What outcomes can I expect from my clinic visits?
There are four possible outcomes from your clinic appointment. The first is that we are able to offer some suggestions to help you through a difficult time. We can continue to follow you through follow-up appointments to make sure that things are still going well and possibly offer further therapy interventions when your child's skills are appropriate. Another possible recommendation is treatment with our interdisciplinary team in an outpatient setting. We may also recommend therapy in our day program to provide a more intensive level of intervention. Finally, there may be a need for inpatient hospitalization for medical stabilization and therapeutic intervention when the child's acuity level requires this level of care.
What should I expect a typical visit in the Outpatient Program to look like?
This program consists of regularly scheduled weekly, bi-monthly, or monthly one hour visits. Initially, we will observe you and your child during a typical meal and then make recommendations for therapeutic interventions, which will be carried out during the ongoing treatment sessions. Outpatient appointments may include treatment by an occupational therapist, speech language pathologist, psychologist and/or registered dietician. The family is required to supply food and beverages for outpatient visits.
What is the Intensive Feeding Program?
The intensive day patient feeding program is a Monday through Friday all day program. Therapy is scheduled between 8 a.m. and 4 p.m. A typical schedule includes 3 - 4 meal/session times. Between meal times your child will have scheduled free times or a nap/quiet time. It is important to remember that each child's schedule is determined by his/her health, medical and feeding needs. Schedules will vary according to the needs of each individual child.
What is the average stay for the Intensive Feeding Program?
The length of treatment depends on the severity of the feeding problem and the rate of progress made by the child. The average length of stay is about 6 - 8 weeks. However, shorter lengths of stay are an option based on the individualized needs of the child and family. A Ronald McDonald House is located adjacent to our campus for families traveling from outside the area. Ask our Family Advocate for more information about Ronald McDonald House accommodations.
When children are admitted into an intensive day or inpatient program, we will provide food and beverages for all your child's meals while at the facility during the day. If you would like other food items to be presented to your child, please speak to their therapist. Food items can also be brought from home. Near the end of your child's admission, we may ask you to bring food items similar to what your family eats at home. All patients will need to bring medicine, diapers (if applicable), medical supplies and equipment not related to the feeding sessions.
What will I have to provide during participation in the intensive feeding program?
Assessment and outpatient therapy patients bring their own food to the child's appointment. It is extremely helpful for us to work with items typically served at home.
If my child is tube dependent, how will his/her needs be met while receiving intensive day patient treatment?
The Registered Dietician in collaboration with the interdisciplinary team will evaluate your child's oral consumption daily, throughout the intensive day admission. As your child's oral consumption increases, your child's tube feeding schedule will be adjusted according to their weight gain and nutritional needs.
What does your facility offer for my child to do when he/she is not receiving treatment?
Free time can include individual playtime, schoolwork or naptime. There is a Ronald McDonald House adjacent to St. Mary's where families can relax and spend time together. There is also a play area on the inpatient pediatric floor that is accessible to our intensive day patients.
Free time may also include occupational, speech, physical, or other outside therapy, on a case by case basis. However, it is important to remember that each child's schedule is determined by his/her health, medical, and feeding needs. Schedules will vary according to the needs of each individual child. We may suggest a short hiatus in outside therapies for the length of the day treatment program in order to provide a more consistent focus for your child on feeding. If your child is school age and/or has an active Individual Education Plan, please discuss your child's educational needs with our Family Advocate.
During my child's admission to intensive day or inpatient treatment, when or how often do I need to be present?
The intensive day patient feeding program requires that you are available to be here with your child at all times. You are the primary caregiver for your child during their day or inpatient program admission. Upon admission, we conduct a number of assessments, which require the presence of the caregiver(s) during the first week.
Throughout the admission, you will be involved in our caregiver-training program. Caregiver training is a very important part of our program because we need to prepare you to successfully implement your child's treatment protocols in the home environment. Voice any questions and concerns you have pertaining to your child and the treatment he/she will receive during his/her admission, as well as to have input in finalizing your child's treatment goals.
Do you use force-feeding?
No. Force-feeding, defined as physically opening the child's mouth and putting in food without giving the child the clear opportunity to open their mouth to accept food independently or with instruction, is never used. Teaching a child to open their mouth when food is presented is the foundation for all future interventions. We always attempt to use the techniques that are the least intrusive in meeting our treatment goals. All of our treatment plans include a positive reinforcement component (such as verbal praise or video/toy play), and they may also include other techniques, including shadowing and prolonged presentation, which do not allow children to end a meal by crying or turning away.
How are treatment decisions made?
A feeding team reviews your child's treatment plan and makes treatment decisions together with parent involvement.
Why is baseline assessment important?
During the intensive day feeding program, baseline assessment is used to measure the level of the child's feeding behavior before we start treatment. The baseline phase typically lasts for 1-2 days while the caregiver and therapist have an opportunity to feed the child without any intervention. The goal is to get a clear understanding of the feeding problems that will be addressed as part of the treatment plan. The data we gather during baseline is used to determine the effectiveness of our treatment. Baseline data is also used to determine which treatment interventions we will use.
Can other caregivers come in to observe and receive training?
Yes! We are certainly willing to help train as many of your child's caregivers as possible. If there is another person(s), such as a therapist, teacher, babysitter, or other relative who routinely feeds your child and whom you would like to have trained, please discuss this with us. We have found that consistency is very important in our feeding program success. It is preferable to have all care providers using the same feeding routine so that the child can learn what is expected during the meal. It is also important that other caregivers be trained to feed in case you are unable to feed for whatever reason.