Blended Diets: Why Not Real Food?
by Heather Meyer
As our family struggled with my son's constant ebb and flow of reflux, we tried formula after formula in his gastrostomy tube in a futile attempt to try to calm his gut down. Nothing seemed to make a difference, and his Prevacid dosage climbed higher and higher. It was incredibly frustrating to watch the chronic sinus and ear infections caused by silent reflux in addition to the sleepless nights and feeding aversions. As a mother, I had a nagging feeling that my son was intolerant to something in the formula. But what? Allergy testing showed nothing.
Our Story
Will's battle with reflux disease is only one of several medical and developmental issues that are a result of a partial 4q chromosome deletion. When he was just over a week old, he had a nasogastric tube placed in his nose due to aspiration while feeding. The diagnosis of the chromosome abnormality came just a week later. Due to stress, I made the decision to go ahead and stop pumping breastmilk and begin giving Will formula through the NG tube. Before leaving the NICU, the milk-based formula was changed to soy because he seemed intolerant at the time.
By the time he was a year old, he had a gastrostomy tube placed and was medically cleared to eat orally via a series of barium swallow studies. Unfortunately, by the time he was 18 months old, he was not willing to eat much because his reflux had gotten so bad. Around his second birthday, I began searching for something to help him since there seemed to be no answer medically, other than to increase his anti-reflux medication.
In my search, I came across a Yahoo group who chose to blend real food to put down their kids' tubes rather than traditional formulas. The more I read, the more intrigued I became. A couple of months later, I began blending baby food to feed my son.
At the time, baby food was the only solution because I did not have a blender that would stand up to food from the dinner table, but at least I knew where it came from and what foods he reacted to. After successfully transitioning from formula to all food and milk, we managed to acquire a high powered blender so that Will could eat many of the same foods we were already buying for the rest of the family. By then, Will's reflux--although still present--had calmed down considerably and he began showing real signs of hunger for the very first time.
Although there aren't clear answers as to why a blended diet helped Will, we believe the weight or thickness of the food combined with the ability to use foods that we knew were not upsetting to his system were keys to success. In addition, I feel strongly that our bodies were meant to digest real food whenever possible, and not processed food from a can. Almost two years later, Will is orally fed for seventy-five percent of his daily intake and the rest comes from real food through his tube. Without the blended diet, I am convinced this never would have been possible.
Taking the First Steps
For our family, jumping in head first was the only decision that felt right at the time. For others, a transition period is necessary. There are no set answers on how to switch someone to a blended diet. However, it is often advised to transition slowly if intolerances are suspected.
To begin, we started with baby foods that were easy to tolerate and consulted with nutritional websites to make sure our homemade formulas were well balanced. Nutrition Data, a site that lists nutrition facts for every food, was our primary source of information. We also felt the need to show our formula recipes to a nutritionist on staff at one of his doctor's offices to make sure we had not missed any important nutrients that a growing child might need. A book on blended diets, the Homemade Blended Formula Handbook, is also available.
My husband and I took turns creating Will's formula for each meal in a small handheld blender. Other families choose to blend an entire day's worth of food all at once, while still others blend and freeze for an entire month. Because it was pureed to the consistency of thin baby food, it was easily able to go through Will's Zevex pump into his tube.
Having the Right Tools
The Yahoo group was where I first discovered the notion of using real food through a G-tube. I began reading and asking questions of the other families who were making homemade formula for their own tube fed children. Members of this group also included a couple of registered dieticians and a handful of Speech Language Pathologists who were proponents of a blended diet approach. This was immensely helpful to parents within the group because assistance from the medical community could be sporadic. Parents found that while some doctors were supportive, others were reluctant to allow patients to stray from canned formula. Luckily, our local children's hospital was familiar with blended diets, and therefore, they were supportive of our endeavor.
It was during this time that I learned about the Vitamix 5000, a medical grade blender that had the capability to blend even thick chunks of meat to a smooth consistency. Although expensive, the Vitamix company offers a medical discount to families using the blender for tube feeding. After five months of blending baby food, we were able to acquire a Vitamix through a local funding source and began blending meals for Will using real food. This helped our budget as well as making it possible to have more calorie-dense feedings. Therefore, we were able to feed less volume overall and Will was still gaining weight.
The last step we took was to hire a private dietician, one of the members of the Yahoo group, to look over our recipes for Will's formula. Although not always necessary, this provided peace of mind for our family, knowing we were feeding him the variety of foods he needed to grow properly.
Looking Back
We've now made it two years blending Will's formula for his tube. Since we've started, he has gone from only eating and drinking for pleasure to eating and drinking 75% of his total intake. We are getting ready to cut another feed from his tube, which brings him down to one bolus of five ounces per day.
We have also found that he is intolerant to milk, soy, and gluten products by rotating foods in the blend and eliminating one at a time. He rarely deals with acid reflux, unless he is sick, and his meds have been decreased overall. Without a doubt, the blended diet has allowed Will to make progress in an area that seemed hopeless at one time and has given him a better quality of life. For that, our entire family is thankful.
Resources
- Homemade Blended Formula Handbook
- Vitamix Blenders
- Oley Foundation Blenderized Diet Page
- Blenderized Diet Page
Heather has a certificate in Special Education and a master's degree in Early Childhood Education. She now teaches at the Aaron W. Perlman Center at Cincinnati Children's Hospital Medical Center. She is married with two kids, Caroline (5) and Will (4), and plans to travel to Vietnam to adopt Norah, who will turn one in January.