Graz Method and Spectrum Pediatrics

I have read a lot of different blogs and websites with stories about children who have feeding tubes. I found it rather interesting that many of them complained about the medical professionals in the US not understanding what happens when you insert feeding tubes into children.   Some chose to wean their kids through the traditional behavioral feeding programs such as Kennedy Krieger Institute while others turned to an approach commonly called the "Graz"method to wean their children from the feeding tube.  It relies on hunger induction strategy - make a child hungry and let them learn to eat.

Here are some examples:

• Tube Fed Kids Forum  - where parents share their experiences or seek advice for their tube fed child
• Hailey Francis - the story of a Hailey, who went through the graz method of tube weaning with a day by day breakdown
• The Crunchy and the Smooth - the story of Heath, a 14 month old child who went through the Graz method with Marcus Wilken.  
• The Life and Times of Stella - the story of Stella, who suffered from reflux and milk protein allergy, with a day by day account of the tube weaning

There is also a website called Notube.com that provides online support for home-based tube weaning from medical professionals/experts in Europe.  It is rather costly but I've read a few blogs that claim it works.  Through our research we also learned of a privately run feeding program in Alexandria, VA called Spectrum Pediatrics that offers a tube weaning program using the same method.  We spoke with the lead therapist (Jennifer Berry) and called a few mothers who took their children through the program. It was rather comforting to know that there are many families who have dealt with this before and it was amazing to hear their stories of how they were able to successfully wean their children from a feeding tube.

In a nutshell, here is how it works:

• Dramatically decrease the amount of food (~50% less) through the feeding tube over 5 days 
• Re-introduce food through various methods when the child shows hunger cues (previously suppressed by the feeding tube).  In the presence of hunger, the child re-establishes a relationship with food and learns to trust food and eat.  

Case Study: Pediatric Feeding Tube Weaning, Huppert (2011)

While the Spectrum program has a 90% success rate, they do not accept insurance and the program is very costly.  Parents have to deal with the insurance companies directly and some insurance companies do not cover feeding programs because they are considered experimental.  The key is to prove that it is medically necessary, which Aetna outlines as the following:

• Behavior problems are interfering with feeding; and
• Diagnosis-specific treatment plan with child-specific interventions and estimated length of treatment are proposed and documented; and
• Medical causes of failure to thrive have been treated (e.g., acidosis, renal insufficiency, malabsorption) without resolution of the feeding problem; and
• Neurological or oral-motor problems exist; and
• Normal feeding milestones have not been met; and
• Physician will coordinate and oversee the treatment program; and
• Suboptimal score on nutritional assessment has been documented
• Unresponsive to initial treatment efforts by a single discipline (e.g., occupational therapist, speech language pathologist/therapist) over a 2-month period

Joy has already received 1 month of therapy and hasn't improved much at all.  Because our next step is for Joy to enroll in an intensive feeding program, we intend to appeal to the insurance company and ask that they cover some or all of the cost of the Spectrum feeding program.  We know this won't be easy.  Some of the mothers already warned us that their insurance companies have refused to pay.