Victory

Provide coverage for a comprehensive and intensive feeding program for my son and children like my son.

This petition made change with 46,707 supporters!


Eating for many people is similar to breathing; it’s natural and doesn’t require much effort. However, for my son, Nolan and for many other children eating is not enjoyable due to medical problems. Eating is skill that needs to be learned and desired. Nolan from the moment he started eating he had difficulty. A comprehensive and intensive feeding program is recommended at this time, give the longstanding nature and severity of his food refusal.

One doctor described his reflux out his nose as one of the worse cases he had ever seen. In addition, to reflux, Nolan was also diagnosed with low muscle tone and aspiration of thin liquids.  The combination of those three disorders has prevented eating and drinking, as one feeding therapist described to me, from being a "pleasurable experience." Currently Nolan’s main source of nutrition is from nasogastric tube.  In his short three years of life this is the third time and longest he required a feeding tube. In a few weeks Nolan will be having surgery to place a gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. This tube will help Nolan maintain hydration and calories in order to help him grow and stay healthy.

The need for a nasogastric tube was after a very painful and traumatic experience Nolan had this past October when his spleen for unknown reasons clotted and stopped working.  The NG tube was and still is simply a quick and fast fix to provide nutrition to Nolan. As his pediatrician has pointed out to me, "being dependent on NG tube feeds indefinitely is not optimal due to poor nutritional variety, the expense and side of effects of daily tube feeds."

Providing Nolan with an opportunity to learn to maintain his own nutrition is skill that will last him a life time, which is why I am pleading with Horizon to stop denying him coverage for the Children’s Hospital of Philadelphia Day Hospital Program. I was first denied because medical necessity hadn’t been established, according to the Horizon. A doctor from Chop had 1:1 review of the appeal which resulted in Nolan’s being denied because other means of therapy hadn’t been attempted first. They stated if I can’t prove that he had feeding therapy with a speech therapist and/or an occupational therapist and failure of these methods could result in overturning the denial.  I documented to them proof he attending feeding therapist since he was discharge from NICU and only stopped when he could see a therapist more often at school.

Nolan currently sees a speech therapist 5 days a week at school and his school’s Eat n Drinking System Team felt that too many therapists working with him would be counterproductive. Every feeding approach has been attempted and nothing has been able to provide Nolan with successful eating skills. Children Hospital of Philadelphia’s feeding clinic is an extreme road but necessary one at this point in Nolan’s life.



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