How to Select a Tube Weaning Program

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ABOUT THE AUTHOR
Hello everyone! Before I start, I’d like to introduce myself and my
little guy, Eli.My name is Krista Puruhito and I am a doctoral student.
I study learning and motivation. I tell you this because it plays an
important role in how I went about choosing the right program to
wean Eli off of his feeding tube. My little guy Eli was born 16 weeks
early. He spent his first 102 days of life in the NICU and came home
with and NG tube. He suffered from really bad reflux and eventually
ended up with a g-tube when he was only 8 months old. The reflux
continued and the doctors here in Arizona could not provide us
with any answers as to why he was projectile vomiting several times
a day, so they wanted to do a Nissin Fundoplication. He had been
receiving feeding therapy since he came home from the NICU, but
it just didn’t seem to be helping any. He would touch food, but
he wouldn’t eat it. At one point he had dysphagia and required
thickened feeds, but by the time he was 13 months old we knew that
he could drink safely, even though they could not confirm it in the
hospital (because he would not drink on demand). My husband and I
decided that the feeding tube had served its purpose and, instead of
doing another surgery, it was time to get rid of the tube all together.
So we went out researching programs and decided on NoTube. We
started the NoTube program in October of 2013 and just 12 days
later were able to stop tube feeds completely. Eli’s tube fell out a
month later, and he has been tube free since! He is a happy, healthy
growing boy that loves to eat now!
The therapeutic
experts at NoTube
have developed a
unique solution to
help these children
overcome the need
for a feeding tube.
NoTube changes the way children with a feeding tube live their lives.
Currently, more than half of children with a feeding tube and their
families experience significant negative side effects. The therapeutic
experts at NoTube have developed a unique solution to help these
children overcome the need for a feeding tube. In several online
and on-site programs, children learn how to eat independently until
ultimately, the feeding tube can be safely removed. In the last five
years, NoTube’s experts have helped wean more than 350 children
with a success rate of 90 percent; in the last three decades, we’ve
helped more than 3000 children become tube-free.
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OUR PROGRAMS
We’ve designed each of our programs to help you teach your child to eat whether
they’re tube dependent or a picky eater.
Netcoaching
Receive daily personal coaching from our leading tube weaning experts who will
help you teach your child to eat without a feeding tube right from the comfort
of your home. In this internet-based program, you and your family are able to
stay at home while our team of experts works with you via our online coaching
platform. To date, more than 200 children have participated in this very program
and over 90% have been fully weaned off the tube.
Eating Schools
Interact in-person with our complete therapy team and other families in a 2-week
intensive course that teaches your child to eat without a feeding tube while
receiving support online before and thereafter. We offer our Eating Schools at
several locations worldwide to make it as accessible as possible to families like
yours.
Learn To Eat
Experience professional medical and therapeutic support on a month-by-month
basis using our online platform as you help build your child’s eating skills while
staying in your familiar environment. In this program, we work with a variety of
early infant feeding disorders such as picky eating, infantile anorexia, feeding
disorders related to Autism Spectrum Disorder (ASD) and others. Our goal is to
dramatically improve your child’s openness towards a wide variety of foods and
increase the daily intake of different foods in the long-term.
Play Picnics
Get a sneak peak into how our medical team teaches children to eat on their
own in these relaxed, fun picnics, held in cities across Europe. Play Picnics are a
specific group therapy based on the “Graz Model of tube weaning” that aim to
support tube dependent and children with other early eating behavior disorders
to make the transition from enteral to oral nutrition and to extend their eating
skills.
Home Visits
The ultimate in personalized in-home medical guidance for teaching your child to
eat where members of our team join your family for intensive multi-day therapy.
Which program is right for my child? [ View our program comparison grid ]
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How to Select a Tube Weaning Program
It is rather difficult to compare feeding therapy programs and tube weaning
programs because the information that each program’s website provides is
drastically different. Asking some of these questions may require a phone
call to the program, or even an in person meeting. I will guide you through
my thoughts behind each question and at the end of this document you will
find a succinct list that you can print and use to take notes on each program
that you are considering. Lastly, I’d like to let you know that I try to use the
word program instead of feeding therapy or tube weaning because I do
believe that they refer to different theoretical approaches and you are likely
looking at both if you have found this document.
1. Where is the program located?
Often times the programs are located far enough away
Location
and Time
from home that it may require the family to relocate while
the child is in treatment. Additionally, some programs are
located inside of hospitals. If the program requires the
child to be inpatient, there is an additional risk of infection.
2. Is there a waiting list?
We found that often programs had long waiting lists. Even the one closest
to us told us that it may be a year before they even call us in for an initial
consult. Waiting to wean a child when they are ready can only cause the
oral aversion and food refusal behaviors to worsen, so as soon as they are
medically stable and able to be weaned, it should be done!
3. When is the soonest you can start?
Even if there isn’t a waiting list, it may still be 30-60 days before you can
actually start the program because of scheduling and insurance approvals,
so ask.
4. How long does the program usually take
to completely wean a child off of their tube?
Some programs are 2 weeks, others 6-8. Some
take even more time. Our wean with NoTube
was very short. Our kiddo had his last tube feed
on day 12 and then we just monitored him.
How to Select a Tube Weaning Program
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5. Will participating in the program require me to travel to them?
If so, for how long?
If you have to travel to the program make sure you know what the minimum
and maximum times for the treatment program. Some programs, even
though they have a short inpatient time, have daily or even weekly outpatient
visits that are a part of the program. So, ask about expected time from start
to finish if there are multiple components.
1. How much does the program cost? Is it a flat fee,
or do they charge per day or week?
Costs
While we were researching programs it seemed that
everyone had a different fee structure. NoTube is a flat fee
program, others charged by the day, and others charged
depending on the type of service that was provided at
each session. We were told by multiple programs that they
just billed the insurance company and didn’t even know
what the actual costs were. It is important, even if they are
billing your insurance company, that you know what the
program costs because even if there is a pre-authorization
from your insurance company, some have limits on the
dollar amount or number of visits for specific types of
services they will pay for, so you may still be responsible
for a portion of the fees.
2. How much will it cost to travel to and remain at the
program site?
In addition to program costs, you should also consider
what it is going to cost you to travel to the program site.
If the site is far away, you may have to pay for lodging as
well. This can add up into the thousands if you are looking
at a program that is out of state and 6 weeks long.
3. Do I have to pay out of pocket, or will insurance cover the program?
Some programs bill insurance, and others will expect you to pay out of
pocket, so it is an important question to ask this question so you can make
sure that your personal financial situation can accommodate the financial
demands of the program.
How to Select a Tube Weaning Program
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4. What are the limits of coverage for this type of service for insurance/
state health care?
Every person has a different financial situation. Some insurance covers
feeding therapy or tube weaning, some doesn’t. Those companies that do
may have limits on the amounts that they will pay, so call your insurance
company and ask in advance what they cover.
5. If the program requires you to be away from your home, how much
will it cost you in lost wages to be away from work?
In addition to paying for the program itself, travel and lodging, because most
programs are long (6-8 weeks) most people also have to take leave from
work and lose wages while they are gone as well. If both parents are leaving
work to accompany the child this can get costly. It is another important
consideration.
6. Will you have to pay someone to care
for your other children/house/pets while
you are gone? If so, how much per day?
Another hidden cost of attending an
intensive inpatient program. If you have
other children or pets you will need
someone to care for them while you are
gone. Even if you take your other children
with you, they cannot be in the clinic during
the appointments, so someone will need to
watch them.
7. Is there a guarantee that the wean will
be successful? If not do I still have
to pay?
So by now you probably have a really long
list of expenses adding up in your head. A
few programs that we looked up were going
to cost close to $100,000 USD by the time
everything was paid for. So what happens
if your child is not able to be successfully
weaned? Do you get your money back?
How to Select a Tube Weaning Program
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1. What theoretical view does the program
draw their approach from and why?
Therapeutic
Approach and
Experience
To me this question was probably the most
important one. As I stated in the intro, my area of
research is learning and motivation. I know that
behavior based approaches may get a child to
comply with a request, but it rarely gets the child to
develop a genuine interest in what is being done.
My goal for tube weaning was not just to get my son to eat, but for him to
enjoy eating. That is a big difference, and so I would encourage you to think
hard about the different approaches that are out there.
Most programs that I found were based on Behaviorism. They use positive
reinforcement to get the children to eat. This may involve different types
of praise or rewards for eating, and is often combined with distracting the
child while they are being fed. Some of these programs do gradual tube
reductions (roughly 10% a week from what I’ve found) to allow the child
to eventually feel hunger as they are working with therapists to learn how
to eat. These programs usually last longer and are very labor intensive for
parents at each meal as the process of feeding the child usually involves
rewarding them after each bite.
There are also programs out there that promote
force-feeding. These programs usually fall in with the
behavior programs. They are founded upon the belief
that the child needs to submit to the will of the parent
and do what they are told. For many reasons these
programs have low success rates and the children
often relapse and become tube dependent again after
the program is over. These types of programs do not
encourage the child to have a good relationship with
food, which only means that the child will continue to
struggle with their relationship with food in the future.
If you are considering the NoTube program I would be more than happy
to talk to you about our experiences with them. I can be reached at
krista.puruhito@gmail.com
How to Select a Tube Weaning Program
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Other programs take a self-determinist approach. They believe that the child
should be allowed to choose what goes in their mouth and bodies. This is
called autonomy. The programs that take this approach usually combine this
with drastically reduced tube feeds to induce hunger. This allows the child
to feel hunger and figure out how to make it go away. It also allows them to
establish a relationship with food on their own terms that will foster a more
healthy relationship with food in the long run. If you are concerned about
your child losing weight during a hunger-based wean, don’t be. They will
eventually gain it back. The medical team is there to guide you through the
process and make sure that your child’s health is never put in danger.
2. What is the long-term goal of the program for each child?
This is not a question I thought of asking when we were looking for
programs, but one that I now think is important because I have become
aware of the varying perspectives on getting rid of tubes. Some programs
aim to teach children to eat, some to get them to eat when rewarded, and
others to enjoy eating on their own terms. The underlying assumption with
all of these is that tube feeds will decrease and oral intake will increase.
3. Ask the program to define what a successful wean is. You should also
decide what it is you are defining as successful.
This is very important because many people have different views on what a
successful wean is. First define this for yourself, and then ask each program
you are looking at. For some it is a reduction in tube feeds, for others it is
to be completely free of tube feeds. Realize that while you may expect your
child to leave the program tube feed free and self-feeding solids, this is not
always the case. Some children take longer to build their skills, confidence,
and comfort with all of the new foods being offered to them, so also try to be
realistic and enjoy watching your child eat whatever it is they are happy with.
How to Select a Tube Weaning Program
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4. How long has this program existed in its current state? How many
children has this program successfully weaned?
This will help you gauge how much experience the program has. Programs
change over time, so ask how long they have been using the methods that
they are currently using. I would even go so far as to ask how many children
they have weaned that are like my child (similar age & medical history). You
need to know that you are selecting the right program for your child and
family.
5. How many of these children are still tube free 1 year later?
You will be surprised at the drastic differences in “success” rates when you
ask this question. Many of the programs that we looked at only had a 50-60%
success rate. NoTube’s success rate was the highest of all of the programs we
looked at, 90%.
6. Who are the lead physicians and what is their role in the program?
Know who you are going to be working with, and how often you should
expect to interact with them. Make sure you meet with this person or have
some sort of interaction with them before you decide on programs. If they
make you feel uneasy then you may be in for a bumpy ride. If they make you
feel calm and at ease then you are likely to have a better experience with the
program.
7. Who else will be involved in my child’s wean?
In addition to the lead physician you are likely to interact with a number of
other people, including physical therapists and perhaps even psychologists.
Meet or talk with them if you can. Again, this is a big investment and you
need to make sure that you are picking the right team! Get an idea of what
the whole program entails and how the process works.
How to Select a Tube Weaning Program
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8. What role do parents play in the process?
For me it was important that we found a program that allowed parents to be
an integral part of the process. None of those therapists were going to come
home with us when everything was said and done. We needed to know how
to do everything. In addition to that, I didn’t feel it was appropriate to just
hand my son off and let someone take him behind closed doors without me.
The only time that’s ever happened was when he had surgery. Lastly, this is
an emotional process, both for the child and the parents, and in my opinion
you should be able to experience the joys and successes with your child as
they take the journey to being tube free!
9. What does the program do to help parents with their
tube dependency?
What? Therapy for parents? I’m not the one with the tube? So why ask this?
Well, as parents of tube fed children you have likely had it drilled in to you
that you have to weigh and measure everything. Every ounce counts, and
you’ve been forcing food in to them for a good amount of time. “They have
to gain a certain amount of weight each week or their brain won’t develop
properly” one doctor told me. Talk about stress!
The tube is what’s keeping your child alive, so what happens when your child
starts eating and you are told to stop using the tube? Can you actually stop
using it? Yep, you as a parent are tube dependent too.
There needs to be a conversation about this so
that parents can cope with the process as well. I
am not going to lie to you. There are days when Eli
had appointments and I knew he was going to be
weighed. Even though he was recently weaned, I
really thought about bolusing a few ounces into his
tummy so that he would weigh a bit more at the
doctor’s office. But I didn’t. I had to let go and trust
that my child would be able to figure it all out on
his own. This is part of the process of tube weaning,
and parents need to have a support network that
can help them cope with it. So whether there is a
psychologist in the program or a parent support
group that you can go and talk to (in person or
online), ask if there are resources there for you.
How to Select a Tube Weaning Program
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1. What conditions typically prevent a child from
being successfully weaned? What conditions
Individual
Situations
enable success?
The program that you are interested in will likely
do a thorough medical evaluation of your child to
determine if they are able and ready to be weaned,
but I think it’s important to know what physical
and environmental factors both help and hinder
weaning. If your child has a complex medical
situation, weaning might not be possible. If you
constantly hover over your child and worry about
every bite they put in their mouth, that might not
help either. So ask, both about your child and about
the environment.
2. Look for program reviews.
Can you talk to families that have been through the program?
This one I would save for last when you’ve narrowed down your choices to just
a few as it can be time consuming. Finding adequate program reviews online is
hard. In addition to finding them, when you do find them, you may find that they
are dated, which means that they may not be valid any more as the staff and
possibly even the process may have changed since that particular family was
there 10 years ago. So do look, and bring any questions or concerns you have
back to the program and ask about them. I found that the better way of getting
information was to talk to people that had been through the program recently.
Whether this is done online, in person or over the phone, I think you will find
that the quality of information is higher and will give you an opportunity to ask
questions as well. That being said, If you are considering the NoTube program I
would be more than happy to talk to you about our experiences with them. I can
be reached at krista.puruhito@gmail.com .
How to Select a Tube Weaning Program
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Appendix
Location and Time
1. Where is the program located?
2. Is there a wait list?
3. When is the soonest you can start?
4. How long does the program usually take to wean a child off of their tube?
5. Will participating in the program require me to travel to them? If so, for how long?
Costs
1. How much does the program cost? Is it a flat fee,
or do they charge per day or week?
2. How much will it cost to travel to and remain at the program site?
3. Do I have to pay out of pocket, or will insurance cover the program?
4. What are the limits of coverage for this type of service for
insurance/state health care?
5. If the program requires you to be away from your home, how much will it cost you in lost wages to be away from work?
6. Will you have to pay someone to care for your other children/house/pets while you are gone? If so, how much per day?
7. Is there a guarantee that the wean will be successful? If not do I still have to pay?
Therapeutic Approach and Experience
1. What theoretical view does the program draw their approach from and why?
2. What is the long-term goal of the program for each child?
3. Ask the program to define what a successful wean is. You should also decide what it is you are defining as successful.
4. How long has this program existed in its current state? How many children has this program successfully weaned?
5. How many of these children are still tube free 1 year later?
6. Who are the lead physicians and what is there role in the program?
7. Who else will be involved in my child’s wean?
8. Who are the lead physicians and what is their role in the program?
9. What does the program do to help parents with their tube dependency?
Individual Situations
1. What conditions typically prevent a child from being successfully weaned? What conditions enable success?
2. Look for program reviews. Can you talk to families that have been
through the program?
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Get
touch
GET INin
TOUCH
We know finding the best solution for teaching your child to eat without a feeding
tube can be intimidating. Want to talk with other parents who have gone through the
process and get their perspective?
We have created a special Facebook group for parents who have gone through our programs.
Members cheer each other on, and they are eager to share their stories. It’s a great place to learn
about our programs and hear firsthand experience from NoTube children and their families.
HAVE MORE QUESTIONS? CONTACT US.
We would be grateful to learn more about you and your childs’ story. Simply get in touch with
Birgit, our program expert, through any of the contact options below.
Birgit Geher, M.A.
Austria: +43 316 34 99 50
Switzerland: +41 44 58 53 490
USA: +1 646 58 30 411
birgit.geher@notube.com
How to Select a Tube Weaning Program
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