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Steps to Feeding – Tube Transition Clinic

Due to the COVID-19 pandemic, the Steps to Feeding – Tube Transition Clinic is currently offering a virtual program. Children enrolled in the virtual program will receive additional information to support a successful experience.
About us

Physician: Dr Vishal Avinashi

Dietitian: Soleina Karamali, RD (on maternity leave)

Dietitian: Alessia Vaz, RD (temporary)

Occupational therapist: Rochelle Stokes, OT, MSc.RS, IBCLC

Social worker: Kathryn Urquhart, MSW, RSW

Nurse: (vacant)

Clerk: Anita Terjesen

Coordinator: Debby S Martins

Medical director: Dr Linda Casey

You need a referral from a doctor, a nurse practitioner or a community feeding therapist to use this service.

 

Eligibility

Your child may be ready for Steps to Feeding – Tube Transition Clinic if:


  • They are up to 18 years old
  • Their doctor has confirmed that they are medically stable
  • They are growing well
  • They can swallow foods and liquids safely
  • They receive bolus feeds through an NG or a G-tube
  • They are showing signs of readiness, for example:
    • They have the oral-motor skills to eat at least one texture of food
    • They are comfortable interacting with foods (touching / smelling)
    • They can sit at the table for at least 5 minutes
  • Traditional methods of tube weaning have not been successful
  • At least one parent, ideally both, or caregiver is able to participate in the entire 2-week program
Some children who do not meet all these criteria may still benefit from our program. Ask your doctor or feeding therapist to contact us.

After we receive your referral, we will contact you to schedule a pre-program evaluation. At this time, you will also receive specific information on how to prepare for your visit.

You need a referral from a doctor, a nurse practitioner or a community feeding therapist to use this service.

 

We can accept referrals from across Canada. However, due to interprovincial licensing agreements, we may not be able to offer a virtual program to children who are not residents of British Columbia or the Yukon.

 

Eligibility

Your child may be ready for the Steps to Feeding – Tube Transition Clinic if:


  • They are up to 18 years old
  • Their doctor has confirmed that they are medically stable
  • They are growing well
  • They can swallow foods and liquids safely
  • They receive bolus feeds through an NG or a G-tube
  • They are showing signs of readiness, for example:
    • They have the oral-motor skills to eat at least one texture of food
    • They are comfortable interacting with foods (touching / smelling)
    • They can sit at the table for at least 5 minutes
  • Traditional methods of tube weaning have not been successful
  • Your child and at least one parent, ideally both, or caregiver is able to travel to Vancouver to participate in the entire 2-week intensive program
  • Your child's pediatrician and, if applicable, community therapists (SLP, OT, RD) agree to assume all responsibility for your child's care before and after the program.
Some children who do not meet all these criteria may still benefit from our program. Ask your doctor or feeding therapist to contact us.
 
  • Stokes RH, Browes A, Avinashi V. 2018. Evaluation of an Outpatient Tube Transition Program. Canadian Association for Occupational Therapy Conference, 21 June 2018, Vancouver, BC.
  • Wilms AL, Cowie HK, Stokes RH, Browes A, Avinashi V, Zwicker JG. Transitioning to oral feeding: A family-centered, hunger-based tube weaning program. November 2021 (in submission). 

Phone: (604) 875-2345

Paging: (604) 875-2161

Toll Free: 1-888-300-3088

Fax: (604) 875-3244


Do you have questions about Complex Feeding and Nutrition?

Contact Debby S Martins, program coordinator, by email or by phone at (604) 875-2345, local 5886.

 

Do you have questions about the Steps to Feeding – Tube Transition Program?

Contact Rochelle Stokes, Occupational Therapist, by email or by phone at (604) 875-2345, local 7155.

 

Our program

The Complex Feeding Clinic was created in the fall of 2009. We started helping children transition from tube feeds to an oral diet right away. Many were able to transition, but we quickly noticed that our "slow and steady" approach did not work for all children. We looked at other methods of tube weaning worldwide, even visiting Austria and the United States to learn more about their approaches.

 

The Steps to Feeding – Tube Transition Clinic was created in the spring of 2014. It is modeled after a similar program at Seattle Children's Hospital. Experienced feeding therapists from Seattle were able to provide mentorship for the first couple of years of the program. We are currently the only publicly funded hunger-based intensive feeding program in Canada.

 

Since the Steps to Feeding – Tube Transition Clinic was created, we have helped more than 50 children transition to an oral diet or decrease their dependence on tube feeds.

We offer a 2-week, outpatient-based, intensive feeding program. Children enrolled in the Steps to Feeding – Tube Transition Clinic will have a medically approved and supervised decrease in their calories and fluids. This stimulates their natural sense of hunger and interest in eating. We individualize feeding sessions to meet the unique needs of each child, but sessions generally model typical family meals. 

 
  • Decrease or eliminate tube-feeding dependency, while increasing your child's oral intake
  • Promote and encourage a healthy relationship with food
  • Empower you to care for your child at home. We will be there to support you.
  • Enable your child to live a full life, despite their medical needs
  • Optimize your child's health, development and well-being

Planning your visit will help you get the most out of your appointment. 

 

What to bring on the first day of the program
  • Your child's BC Medical Card
  • Tube feeding supplies
  • Food for breakfast and lunch, for yourself and your child
  • Special or favorite plates, cups or cutlery
  • Extra clothes and bibs
  • Toys and activities for your child during free time (your child's favourite book, music, videos, etc.). Unfortunately, there are no family rooms at BC Children's Hospital with adequate places to lie down. If your child needs a nap between meals and you do not have accommodations nearby, consider bringing a stroller or a blanket.
  • We will review what to bring after your child's pre-program evaluation.
What we can supply
  • Standard plates, cups and cutlery
  • Supportive high chair, booster seat, Tripp trap chair
  • Microwave
  • Stove
  • Toaster
  • Magic bullet blender
  • There is room to keep food cool in a small bar fridge if needed
Parking

Parking at BCCH can be difficult, especially during midweek clinic days. Give yourself plenty of time to find parking and walk across the large campus. You may wish to take advantage of the FREE valet parking service. This service is located by the TACC building main entrance (near Emergency).

 

If you are running late or are having trouble with parking, please contact the program secretary at (604) 875-2345, local 7464.

Pre-Program Evaluation

The pre-program evaluation is typically an hour long. We are an interdisciplinary team, you will see the entire team at the same time. You will see a doctor, a dietitian, a nurse, an occupational therapist and a social worker for a pre-program evaluation. During this evaluation, we will ask about your child's medical history, growth history, feeding and nutrition history, mealtime routines and behavior at mealtimes. We will discuss your goals and concerns, and we will answer your questions.

 

Our occupational therapist may ask to see your child eating. If we are seeing you in person, we may ask you to bring food from home.

 

If your child is ready for the program, we will discuss potential dates with you.

 

If your child is not ready for the program, we may give you recommendations to help them progress towards being ready.


‎Intensive Program - In-person
  • In the days leading up to the program, your child will have a medically approved and supervised decrease in their calories and fluids. Our dietitian will email you a reduction plan that will typically start on the Thursday before the program starts.
  • Our clinic is located on the second floor of the BCCH Ambulatory Care Building. Follow the yellow ribbon on the floor to Area 10 – Gastroenterology, Hepatology and Nutrition. Check in with the feeding therapist (dietitian, occupational therapist or social worker) every morning. Most often, breakfast starts at 8:30am and lunch starts at 12:30, but we can adjust these times depending on your child's routine.
  • The feeding therapist will measure your child's weight every morning, before breakfast.
  • During the program, we will see your child for breakfast and lunch, 4 days per week (typically Monday to Thursday) for 2 consecutive weeks. At least one parent or caregiver needs to attend feeding therapy sessions. Sessions generally model typical family meals. A feeding therapist will facilitate each session.
  • We will record everything your child eats and drinks in a food diary during the program. We will ask you to record what your child eats and drinks during snacks and dinner from Monday to Thursday, and at all mealtimes from Friday to Sunday. We will discuss this in more detail on the first day of the program.
  • Depending on your child's progress and weight, the dietitian may recommend changes to your child's diet, formula or fluid intake.
  • The feeding therapist will ask you standard questions each morning. These questions are asked either before or after the meal (depending on how hungry your child is), so that the focus can be on enjoying the family together once it starts. There will be no feeding "therapy" taking place during meals.
  • Recommendations for the next meal or next day will be provided after the meal.
Intensive Program - Virtual
  • In the days leading up to the program, your child will have a medically approved and supervised decrease in their calories and fluids. Our dietitian will email you a reduction plan that will typically start on the Thursday before the program starts.
  • Please weigh your child before your clinic visit.
  • Log into your clinic visit using the Zoom link provided by the Complex Feeding and Nutrition clerk. You will be asked to wait in a virtual meeting room. We will let you into the meeting at your scheduled appointment time. Most often, breakfast starts at 8:30am and lunch starts at 12:30, but we can adjust these times depending on your child's routine.
  • During the program, we will see your child for breakfast and lunch, 4 days per week (typically Monday to Thursday) for 2 consecutive weeks. At least one parent or caregiver needs to attend feeding therapy sessions. Sessions generally model typical family meals. A feeding therapist (dietitian, occupational therapist or social worker) will facilitate each session.
  • We will record everything your child eats and drinks in a food diary during the program. We will ask you to record what your child eats and drinks during snacks and dinner from Monday to Thursday, and at all meals from Friday to Sunday. We will discuss this in more detail on the first day of the program.
  • We will record your child's weight every morning. Depending on your child's progress and weight, the dietitian may recommend changes to your child's diet, formula or fluid intake.
  • The feeding therapist will ask you standard questions each morning. These questions are asked either before or after the meal (depending on how hungry your child is); the focus will be on enjoying the family together once it starts. There will be no feeding "therapy" taking place during meals.
  • Recommendations for the next meal or next day will be provided after the meal.
Follow-up

We will see you in follow-up 2 weeks, 5 weeks, 9 weeks, 6 months and 1 year after the end of the 2-week intensive program. We may see your child in follow-up more often if needed.

Pre-Program Evaluation

If appropriate, we will schedule an initial pre-program evaluation with your family to determine your child's readiness for the program. Please note that this does not guarantee acceptance into the program.

 

The pre-program evaluation is typically an hour long. We are an interdisciplinary team, you will see the entire team at the same time. You will see a doctor, a dietitian, a nurse, an occupational therapist and a social worker for a pre-program evaluation. During this evaluation, we will ask about your child's medical history, growth history, feeding and nutrition history, mealtime routines and behavior at mealtimes. We will discuss your goals and concerns, and we will answer your questions about the program.

 

If your child is ready for the program, we will discuss potential dates with you. You must obtain approval for out-of-province care, including arrangements for accommodations in BC, before the start of the program.

 

Due to interprovincial licensing agreements, we are not able to make recommendations during the virtual pre-program evaluation. If your child is not ready for the program, we will provide pre-program suggestions directly to your pediatrician and community therapists to help them progress towards being ready. Your local care team must agree to assume all responsibility for implementing any pre-program suggestions.

 

Intensive Program
  • In the days leading up to the program, your child will have a medically approved and supervised decrease in their calories and fluids. Our dietitian will email you a reduction plan that will typically start on the Thursday before the program starts.
  • Our clinic is located on the second floor of the BCCH Ambulatory Care Building. Follow the yellow ribbon on the floor to Area 10 – Gastroenterology, Hepatology and Nutrition. Check in with the feeding therapist (dietitian, occupational therapist or social worker) every morning. Most often, breakfast starts at 8:30am and lunch starts at 12:30, but we can adjust these times depending on your child's routine.
  • The feeding therapist will measure your child's weight every morning, before breakfast.
  • During the program, we will see your child for breakfast and lunch, 4 days per week (typically Monday to Thursday) for 2 consecutive weeks. At least one parent or caregiver needs to attend feeding therapy sessions. Sessions generally model typical family meals. A feeding therapist will facilitate each session.
  • We will record everything your child eats and drinks in a food diary during the program. We will ask you to record what your child eats and drinks during snacks and dinner from Monday to Thursday, and at all mealtimes from Friday to Sunday. We will discuss this in more detail on the first day of the program.
  • Depending on your child's progress and weight, the dietitian may recommend changes to your child's diet, formula or fluid intake.
  • The feeding therapist will ask you standard questions each morning. These questions are asked either before or after the meal (depending on how hungry your child is), so that the focus can be on enjoying the family together once it starts. There will be no feeding "therapy" taking place during meals.
  • Recommendations for the next meal or next day will be provided after the meal.

During the 2-week, in-person, intensive program:


  • Our physician will provide medical recommendations as needed.
  • We will provide recommendations regarding feeding and nutrition.
  • We will communicate with your pediatrician and community therapists as needed.
Follow-up

Your child will be discharged from the Steps to Feeding – Tube Transition Clinic after the 2 weeks, in-person, intensive program. Your referring pediatrician and community therapists will resume all care at that time. Our team will provide a detailed report for you and your team, along with recommendations and a suggested plan for community team follow-up.

 

After the program, we can provide advice to your child's pediatrician and community therapists as needed. All communication about your child must go through your local care team.

 

If you have previously provided consent to be part of our research study, we will collect data at 2 weeks, 5 weeks, 9 weeks, 6 months and 1 year after the program. This will either be done through your community team or directly from you. Due to interprovincial licensing agreements, we are not able to provide recommendations directly to you, but you can reach out to your local team.

 

By referring your child to the Steps to Feeding program, your pediatrician and, if applicable, community therapists, agree to meet the above criteria. 

The purpose of our daily meals is to teach you and your child mealtime routines and to help them feel comfortable interacting with foods as they start to feel hunger. We try to avoid direct focus on your child; we focus on family time and on the meal. We encourage you to model eating for your child by having similar foods on your plate, as well as interacting and talking about the food properties. These meals also give us a chance to help support your family with establishing mealtime routines. At the end of the meal, we will check in with you regarding any concerns, stooling patterns, hydration concerns, behavioural changes, etc.

 

General expectations

Each child responds differently to the feelings of hunger. It may take some time as they work to make the association between the new feelings they may be experiencing, hunger and oral eating. It generally takes children several days to get into the mealtime routines and be comfortable with us being present at meals. Some children may be more irritable, cranky or display more challenging behaviours. Hunger may sometimes impact children's sleep patterns. As children's eating patterns change, stooling patterns can also change. We ask questions daily to make sure that constipation does not become a concern during the program.

 

Our experience has been that children's weight typically stays stable during the program or decreases slightly. We will record daily, naked or in light clothing, morning (before any food/water) weights to monitor your child's growth and to make sure they don't lose more than 10% of their body weight during the program. It is not uncommon for a child to require 3 to 6 months before they regain their pre-program weight and grow appropriately without tube feeds. Many children who are no longer on tube feeds may start to grow on their own growth curve, which may be slightly lower than when they were on a prescribed amount of tube feeds. This tends to be within an acceptable range (2 standard deviations from their previous growth curve). We will continue to monitor your child following the program regularly at 2, 5 and 9 weeks, 6 months and 1 year after the end of the program, and more often as needed.

 

Mealtime expectations

We have found that mealtime routines and consistency can better support a child to make the connection between feelings of hunger and mealtimes. It allows children to build hunger between meals and learn that mealtimes are the opportunity to satisfy hunger. For this reason, we recommend the following mealtime routines:

 

  • Each meal should take place at around the same time each day. For example, breakfast at 8:30 am, snack at 10:30 am, lunch at 12:30 pm, (+/- afternoon snack) and dinner at 5:30 pm each day.
  • Each meal should start with a short routine to signal the start of the meal. For example: washing their hands, sitting at the table in their high chair/booster seat, putting a bib on.
  • Each meal should also finish with a clean-up routine. For example: clearing plates, washing their face and hands with a warm washcloth, removing the bib.
  • If tube feeds are provided, they should be given at the table, directly after the meal and clean-up routine.
  • Generally, we recommend families offer their child 2 to 3 foods that are similar to what parents are eating. This can be modified during the program to meet your child's skill level. One of these foods should be a preferred food.
  • A typical mealtime length is 15 to 30 minutes. However, mealtimes may initially be shorter or slightly longer. It is important to follow your child's cues to make sure mealtimes are positive experiences. 

Families living outside Metro Vancouver may be able to arrange accommodations at Ronald McDonald House, located on-site. Our social worker may be able to assist you with this.

 
  • My child doesn't have a tube, but only drinks formula. Can they be referred for Steps to Feeding? Yes, if they are showing signs of readiness. Ask your pediatrician or community feeding therapist to contact us.
 

Resources

Tube feeding may be needed when a child is not able or not willing to eat enough to support growth and good health. For example, this can happen when a child has or has had:

 

  • Complex medical conditions or procedures
  • Difficulties with swallowing
  • Negative experiences with feeding
  • Difficulties breathing normally
  • Pain associated with feeding
  • Gut issues
  • Motor problems
  • Sensory issues
  • Negative environments (for example, parental pressures)

Tube dependence happens when a child continues to receive the majority of their nutrition from tube feeds, even when they are not needed for medical reasons anymore. Some children never learned the skills needed to eat and drink, other children are not motivated to eat and drink due to a lack of hunger and fullness cues.

If your child needs tube feeding, oral stimulation will help prevent oral aversions, maintain oral-motor skills and maintain their ability to process oral sensory input. Oral stimulation should be pleasant and enjoyable. If at any point your child become distressed, stop and try again later.

 

Non-nutritive oral stimulation

Non-nutritive oral stimulation is positive touch to your child's face and mouth, without the use of food. Examples of non-nutritive oral stimulation include:

 

  • Including your child in the family meal. This allows them to see different foods and experience different smells.
  • Encouraging your child to explore their hands or different toys with their mouth.
  • Encouraging your infant to suck on a soother or a pumped breast during tube feeds.
  • Giving pleasant or loving touches around your child's face and mouth.
  • Giving firm, but gentle massage on your child's upper body and face.
Nutritive oral stimulation

Nutritive oral stimulation provides positive experiences with small amounts of food. Examples of nutritive oral stimulation include:

 

  • Offering tastes of a variety of foods and liquids (if they have a safe swallow).
  • Encouraging your infant / toddler to suck on a soother, a spoon or a toy dipped in milk or purees.
  • Rubbing a small amount of milk or purees on your child's lips or gums.

1.    Create mealtime routines for the whole family

  • Wash your hands before and after each meal and snack
  • Offer food at the table only
  • Have at least 2 hours between meals and snacks. Avoid grazing on foods in between to encourage coming to the table hungry.
  • Eat together to allow for modeling to occur
  • Avoid the use of distractions during mealtimes, such as TV, IPad, music, toys, etc. 

2.    Have tube feeds mimic an age-appropriate mealtime schedule

  • Offer bolus feeds at the table after offering food orally
  • If possible, minimize the use of continuous or nighttime feeds to develop a feeding schedule consistent with oral eating times. Always speak with your doctor or dietitian before changing your child's tube feeding schedule.

3.    Offer a range of food options

  • Model meal options after typical family meals
  • Aim to offer at least 3 food groups at meals and at least 2 food groups at snacks
  • If needed, modify food textures to meet your child's oral feeding skill level
  • Offer at least one preferred food at every meal

4.    Keep mealtimes positive

  • Avoid pressuring your child to eat
  • Avoid drawing undue attention to your child's intake
  • Keep mealtimes to no longer than 30 minutes to avoid them becoming a negative experience

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SOURCE: Steps to Feeding – Tube Transition Clinic ( )
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