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.  

Boys Already?

I have noticed a trend lately with my little girl.  Boys seems to have no problems kissing Joy.  As a father, I joke about getting a shotgun, threatening boys when they first meet me, and grill potential suitors about how they plan to treat my little girl.  But I guess no one got the memo!   At least these boys are adorable.  

Noah Kisses Joy on the Mouth!

Jackson gives Joy her first kiss!

Major Milestone

Joy is developmentally behind in a lot of areas, particularly with gross motor.  She is now 6 months old but has just started to figure out how to flip from back to tummy.  It is painfully slow to watch but she finally did it!

Joys Loves to Read

I admit I wasn't much of a reader when I was a kid (other than cliff notes) but I really do hope Joy develops a love for books and reading.  Because Joy is often strapped to the feeding tube, we have to find ways to entertain her in a stationary position.  What better way to use the time than to read to her!   Her favorite book is "The Very Hungry Caterpillar" by Eric Carle:

Tube Weaning Methods

After the first month of therapy, we have realized that it is going to be really tough road ahead. Our doctors have started to pressure us to consider surgery to insert a different feeding tube, called a G-tube, which goes directly into her stomach from her abdomen, and to perform a nissen fundoplication, which wraps her stomach so that she can't vomit anymore. These are surgical procedures that will leave several scars.  No one wants to put their child through surgery and I've heard that some parents regret it later on for various reasons.

G-tube

One thing is for sure...we want to avoid surgery at all costs. We just need to find a more effective strategy to help Joy learn how to eat.  Through our research, we learned that there are essentially 2 intensive feeding methods for tube weaning:

1. Hunger Induction - make the child really hungry so that their drive to eat will be strong and re-teach/build the relationship with food. As you can imagine, Joy has a poor relationship with food all her life due to reflux and allergies. No wonder she was never interested in eating! But this could be potentially dangerous because you're starving the child. What if Joy doesn't eat? We need some serious medical support for doing this type of approach.
2. Behavioral - if your child is old enough to understand the concept of rewards, this approach may work. "If you eat this, you get to play with this toy." "If you don't eat this, you don't get to play with this toy" You get the picture.   Many of the doctors we consulted with felt this was not appropriate for Joy given her age.  

Joy is too young to even understand "No!" and "Bad girl." Whenever she does something naughty, we scold her and then she laughs or smiles. As we thought about it, we now realize that the Hunger Induction method is Joy's best hope to learn how to eat again and to get off the feeding tube.

Jumping for Joy

One of Joy's favorite toys is her Jumperoo.  She doesn't care what time it is...she just loves flying up and down!  She must get this from her mom because I do not like rides at theme parks.  The great thing about this toy is that it strengthens her legs and teaches her how to stand on her feet.  Maybe one day she can be a gymnast or soccer player.

Thank you Uncle Dave for this great gift!