An Interview with "No Tube"

What can you tell me about NoTube Organization?

NoTube supports families with children with tube dependency, working with the "Graz model of tube weaning".

We help children who are "stuck" on a feeding tube in absence of a medical need for it. Although the children are able to eat from a physiological point of view, they show signs of oral aversion and food refusal. We help them overcome this obstacle and finally be able to eat orally and sustain their nutritional needs. Furthermore, we help all children with early eating behavior disorders, such as selective eating disorder, infantile anorexia...

Where are you located?

The LLC is located in Switzerland and Austria. We offer online options (so families from all over the world can reach us without the need of travelling long distances, which is a big advantage for medically fragile children) as well as onsite options in different countries all over Europe. Our EAT Campus will be open in April 2016, in Graz, Styria!

Who is on your team?

We have an interdisciplinary team consisting of:

·         Pediatricians (Marguerite Dunitz-Scheer and Prof Scheer have developed the Graz model of tube weaning, they have weaned thousands of children)

·         Psychotherapists,

·         Clinical Psychologists (Sabine and Karoline are also Dr in Medical Sciences and have published a lot on the themes of tube feeding and weaning)

·         Physiotherapist (Eva. who looks back on 25 years of working with children with eating disorders)

·         Music Therapist (Birgit, who is also a social pedagogue and is quite experienced in her work with special needs children) ,

·         Psychosocial counselor

·         Non-medical professionals (marketing, financial department, IT...)

What made you develop an organization for No Tubes?

Our program "Graz model of tube weaning" has been developed and evaluated in the University Children's Hospital of Graz. Due to the increased number of interested families from all over the world, we wanted to offer services in order to help all these families adequately. We are absolutely not against feeding tubes and know that they fulfill a life-sustaining function. But when it comes to the weaning phase, not many professionals are trained and interested, so many children stay stuck on a feeding tube in absence of medical needs for it. These are the children we want to help. As said, we also offer feeding therapy for children with other early eating disorders.

How do you offer help?

Online: 

1. Tube weaning via Netcoaching - treatment via as specialized online platform, standardized protocol of reducing tube feeds, daily contact to our experts including messages, video analysis, weight and intake evaluation. This helps children who are medically fragile as there is no need to travel; furthermore the family saves the whole travel costs and stays home in its familiar environment. Over 90% of all children participating can be weaned completely off their feeding tubes! There is no duration limit, we treat the child until it has reached his/her full potential.
2. "Learn to eat" program - online coaching for children with all kinds of early eating disorders

Onsite:

1. Eating Schools in our EAT Campus in Graz: 2 weeks intensive support onsite by our interdisciplinary team in addition to the Netcoaching!
2. Play picnics: all over Europe, to get in touch with our philosophy and programs, our team members currently travel to different locations in France, Sweden, the Netherlands, Great Britain, Switzerland and are willing to come to other countries if wished.
3. Home visits by our medical experts for children with tube dependency and early eating disorders in order to help the family’s onsite.

Can you give some examples of how you have helped?

We treat children with different underlying medical diagnoses: extreme prematurity or birth complications, heart defects, metabolic diseases, malformations or diseases of gastrointestinal tract, genetic syndromes, psychosomatic/psychiatric diseases, neurological diseases, oncological diseases, renal diseases... who suffer from tube dependency. Furthermore, we work with children with different kinds of eating disorders such as highly selective eating, infantile anorexia, eating disorders in children with autism...

Please have a look at our patient's testimonials: :https://www.notube.com/tube-weaning-success-stories 

How do you think your organization can help children living with FPIES and feeding tubes? Also, how can you help families looking to avoid the necessary placement of a tube?

Before tube placement, we could evaluate the current nutritional state and situation with the doctors onsite and give specialized advice and help with the decision about tube feeding and support children during the phase of tube feeding or to help optimize the nutrition in case a feeding tube can be avoided from a medical point of view. For children who got tube dependent we can help with weaning keeping the special situation of FPIES patients in mind.

This post is a written interview with NoTube and The FPIES Foundation Executive Directors.  

Feeding Tube Awareness Week 2014

Feeding Tube Awareness Week®, launched in 2011 by the Feeding Tube Awareness Foundation, is a unique opportunity to raise awareness about feeding tubes.  

There are several reasons a child may need a feeding tube.  Food allergies can be one of those reasons and some infants/children living with Food Protein Induced Enterocolitis Syndrome depend on feeding tubes for their nutritional needs.  

What types of feeding tubes are there? There are different types available to meet different children's needs. These include NG Tubes, NJ tube, G-tubes, GJ Tubes and IV Nutrition-- a child's doctor and his/her family will work together to determine which tube is the best fit for the child's situation. For partial nutrition or complete nutrition, from overnight feeds to bolus day time feeds, blenderized diets or elemental diets-- whatever the means or the delivery, the goal is the same: to provide nutrition for optimal growth and development. 

Whether for a family's own education, or to help to educate others and to spread awareness, the Feeding Tube Awareness website has all the information families and their loved ones could need about feeding tubes. Check it out today!

This post was written by the Executive Board of The FPIES Foundation 

Feeding Tube Awareness Week 2013

For some children with multiple food allergies such as Food Protein Induced Enterocolitis Syndrome (FPIES), a feeding tube is a necessary means for getting the optimal nutrition necessary for growth.

The Feeding Tube Awareness Foundation is "dedicated to providing parents and caregivers with the information needed for day-to-day life with a tube fed child." And their goal is "to make what is medically complicated, easier to understand".

In honor of Feeding Tube Awareness Week 2013, The FPIES Foundation would like to share:

• An article about feeding tubes in an FPIES family featured in Complex Child E-Magazine: Overcoming the Small Percentiles: Our Super Tubie.  Complex Child is a "monthly online magazine written by parents of children with special healthcare needs and disabilities.  It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.  Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials."

• About additional resources, from our Resources page, such as: 

The Oley Foundation - "The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that enriches the lives of patients dependent on home intravenous (parenteral ) and tube feeding (enteral ) through education, outreach, and networking. The Foundation also serves as a resource for consumer's families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients."

ThriveRx - "ThriveRx’s mission is to optimize the nutritional well being of our consumers through our customized approach. Our home parenteral and enteral nutrition program is driven by our customers’ needs while maintaining the highest standards in service and clinical management. Quality care that fosters independence and empowers consumers and their families is the fundamental basis from which our business decisions will be made".

Mini Buddy - Mini Buddy provides "[stuffed] animals with feeding tubes to children and adults who have a feeding tube or who will be getting one of their own soon. They are also focused on bringing tube feeding children and their families together".

Tubie Friends- "Tubie Friends a non-profit group that is administered by two mothers whose children have feeding tubes and want to use their experience to make life easier for the thousands of children relying on feeding tubes for their nutrition."

• Our featured Inspiring Family Story: 

Ryker's Story:

On January 5, 2011, our world changed forever. Our youngest of 4, Ryker (6 months old), began vomiting at the babysitters house. Just thinking it was the stomach flu, I called my mom and asked her to go get him. The babysitter called me 10 minutes later and said I needed to get there ASAP, something was wrong with him. I grabbed my stuff and rushed out the door. Within 5 minutes I was running into her house and witnessing a scene I would never forget. My little baby boy had lost all color and was motionless, with the exception of dry heaving. He looked as though he was having a seizure and was not responding to my touch or voice. I quickly called 911 and he was rushed to the ED. The doctor there explained that she did not know what was wrong and he was in shock. They were going to helicopter him to the nearest Children’s Hospital. My heart sunk. We were devastated.

At the hospital, we spent 4 days with no answers. He quickly came back to us and was his usual feisty self. They sent us home with the only instructions of “if he vomits again, go to the nearest ED immediately”. How scary is that!

When I was finally ready to go back to work the next week, I asked the babysitter to not give him the rice cereal, just to stick with breast milk for the time being. I remember her asking if I thought it was the rice cereal that made him sick. I told her I wasn’t sure but something was telling me it was the cereal. She had taken care of a child in the past with FPIES to rice and put me into contact with that mom. I knew immediately that is what he had and we were diagnosed 10 days later.

When we were at the allergist, Ryker tested positive for over 30 foods by skin, patch and serum. We were told to stick to breast milk only for the time being. From January to April, he was doing great but was slowly dropping down on the weight charts. Every food we tried became a big disappointment. Either he would have a reaction or he would refuse to eat it. We finally had him scoped in August and found out that he had Eosinophilic Colitis along with his FPIES.

In October, with no safe foods, we traveled to Chicago to see a specialist at Lurie’s Children’s Hospital. I remember crying all the way home after Dr. Wershil said that Ryker needed a feeding tube to survive. He had dropped off of the charts at this point with no safe foods. He had even had an FPIES reaction to Elecare- a hypoallergenic formula!! We reluctantly agreed and on October 25, 2012, Ryker had his NG tube placed. Within 3 weeks he had gained 2 pounds! We decided to go with the g-tube and had that placed on November 29, 2012.

The g-tube is amazing! It has saved my son’s life. He has gained 4 pounds in the 6 weeks that we started this path. He has added chicken and potato into his diet with no issues and he looks great! My only regret is that we hadn’t done this sooner. My once tiny baby boy now has dimples!! And chubby thighs!! And a double chin!! This makes this momma so happy!!

Life hasn’t been always a walk in the park with the g-tube but the stress of worrying about how much he is eating has been lifted and now we can enjoy our baby boy. The g-tube has been such a blessing for us and it saved our son’s life!

Written by Ryker's mom, Darcy S, to honor Feeding Tube Awareness Week 2013