Do you have references? For those it has worked, for those that is hasn't?
Yes! While GIE is a young business, and we have only successful references at this point (which we are happy to provide), our team’s experience with tube weaning, and the methodology that we use, has a 100% success rate when families work together with the therapist.
What makes a patient successful at the tube weaning process?
To us, success is when the entire family is enjoying meals together. This means that the child is happily eating foods of enough variety to satisfy their age-appropriate needs, in a relaxed, joyful family setting; parents/caregivers are able to let go of the medicalized feeding paradigm that exists with tube feeding, and the family moves into a typical feeding format with confidence in reading the child’s cues and a focus on the social, fun aspects of mealtime.
At what point do you determine if a patient is not going to be successful after they have started the program?
We have designed our program to avoid that very situation. The required Pre-Program Consultation includes two hours of conversation (one hour to follow-up on the intake form, and an hour one-on-one with one of our feeding consultants).
If our team doesn’t believe that a child is ready to wean, based on our free review of the intake form (for example, there are still numerous medical issues, upcoming major surgery, unsafe swallow, etc.) we let families know before they pay for the Pre-Program Consultation.
If at the Pre-Program Consultation stage, where we dig deep into feeding by speaking with parents/caregivers and reviewing videos, it seems that the child needs more time, we recommend pre-wean steps to take, either on your own, with your local therapist, or with Growing Independent Eaters.
What is the average time it takes a child who has been 100% tube fed to start taking something orally? What about for those who have had some oral feedings to start taking more?
In our experience, after ensuring that there is no physical discomfort or fear around food, trust and comfort are present at any feeding situation, and tube fed calories start being reduced, it takes between 2-10 days for the appetite system to come back online.
How fast this happens varies from child to child. As a side note, we do not counsel creating ravenous hunger (as that destroys comfort around food), but appetite sufficient to open the door to oral eating. Children who are already eating orally, when calm and respected in their “no” cues (no coerced feeding), often progress faster.
What is the average time it takes someone on the program to get off the tube?
The timing depends completely on the individual family, but can range from 2 weeks to 3 months on average.
Do you do rapid weans?
We don't focus on speed during a wean. Every situation is different so we don't stress a universal timeline during our consultations. Every feeding plan is designed specifically for that child and family.
Can you describe a typical day on the program – what types of information/guidance do you provide?
Your wean consultation includes the development of a personalized plan: how to structure meals, how to read cues, a suggested tube-feeding reduction schedule, dietitian review of feeding, mental health support for parents. We can check in with you every day, by phone, text, or Skype, or every few days, depending on your preference. We typically start off with an hour of feeding consultant time to make sure the plan makes sense and to answer any questions that come up. After that, we can exchange quick messages so that your purchased hours go a long way.
Our consultation packages are ranked by support levels, and families choose how many hours of support they want to purchase. We also have a menu of “a la carte” services, where you can purchase consultation hours individually at any time.
What is your approach for infants? How does this different from older kids who have some verbal communication skills or are able to eat some solids and purees?
Our approach is similar, because while infants are not verbal, they still have rich communication skills! It is all about reading a child’s cues, creating trust and parent-child bonding around food, and making sure that feeding is comfortable and calm for everyone involved. This is the same regardless of age or developmental stage.
What techniques/approach do you use to counter oral/feeding aversion? If having an NG tube is contributing to the problem (i.e. making swallowing difficult, irritated esophagus, etc.) how do you manage around that?
NG tubes can definitely affect feeding, more so in older children than young infants. However, without the presence of appetite, it is hard to say whether a child’s “aversion” is fear of eating or whether it’s an understandable (and logical) refusal of food when full. Our approach centers on guiding parents to bond with their children around food, to decrease stress for everyone with techniques and ideas that are particular to each family, and then introducing appetite once feeding situations are calm. In other words, step one is to make sure that any trauma or stress that could be causing aversions is healed, and only then following with step two of initiating appetite.
What is the process to ensure the child is medically stable/ receiving enough to stay hydrated, etc.? When would you decide it is medically necessary to increase tube feeds?
While we provide our opinion and guidelines, your local physician or therapist should guide you in precise signs for your child. That said, we do not counsel extremely rapid reductions or reductions when a child is not responding to the initial tube decrease. Our team’s years of hands-on, clinical experience and collaboration with physicians and other care givers have given us a solid skill set in counseling what is not only effective but SAFE. We are always happy to speak to your care providers about any concerns they may have; just let us know.
Does my family have to travel with your program?
No, our consultations are all done remotely.
Do you provide services for non-pediatric clients?
Yes, please email us at firstname.lastname@example.org for more information on how to proceed.
What is the criterion for determining when the tube can come out? What determines if oral intake is sufficient?
Your medical provider makes the decision on tube removal. We share our opinion and insights, but the decision to remove a tube should be done in partnership with your local doctor. Again, if our therapist recommends that a child is ready for an NG tube to come out (typically with 50% oral intake or more), we are happy to speak with your medical provider about that next step if they have reservations.
Do we continue on the consultation program until the tube is out? Or beyond when the tube is out?
That is completely up to you, depending on how much support and guidance you would like!
What type of follow up support do you provide once the tube is out?
Because we created our program to be flexible to the needs and finances of individual families, post-wean support is limited only by a family’s desire for how much or little continued support they would like. We are here to walk with you for as long as you feel the need.
RESPONSE TIME AND PAYMENT
How quickly do you respond to questions? What if someone has an urgent question that can’t wait until the next day?
We respond to questions within 24 hours, faster for urgent questions. Some replies are limited by time zones (our response hours are generally between 8am and midnight Pacific Standard Time). Our dietitians and mental health consultants have a longer response time and are best reached through scheduled consults.
Do you accept any insurance?
We do not, because our services are for parent coaching and consultations, not for medical or therapy services directly for a child. However, several clients have had success in being able to use HSA/FSA funds to pay for consultations.
Is there a payment plan (i.e. pay x% at the beginning and y% once the program is complete)?
No, we ask for payment of your chosen wean package at the start of consultations.