Feeding Tubes for Nutrition and Medication

By John Lehman

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Sometimes, depending on the severity of the disorder, children with cerebral palsy have difficulties feeding themselves. In these cases, a feeding tube may be necessary for your child to meet his or her dietary and nutritional requirements. Feeding tubes could also be used to allow your child an easier way to take their medications. Learn more about how feeding tubes can help children with cerebral palsy.

When is a Feeding Tube Necessary?

There are several factors your doctor will consider before recommending the use of a feeding tube, including calorie intake or prolonged lack of weight gain. If calorie intake is not the issue, your child’s medications could be the culprit, as some medications can lead to vitamin deficiencies. In any case, your child’s doctor will evaluate your child’s nutritional needs and determine whether a feeding tube is needed.

What Makes Up the Formula?

Once the use of a feeding tube has been deemed necessary, the next step is determining what sort of food will be used. Your child’s doctor will likely consult with a nutritionist to decide on your child’s diet. There are a variety of options available for you. Doctors or natural food retailers can provide commercially made formulas designed to target specific deficiencies in your child’s diet. You can also make your own formula using a blender and ingredients your child’s doctor has deemed appropriate for your child’s dietary needs.

What is the Procedure?

The process of installing a feeding tube is known as gastrostomy. Depending on how long the tube needs to be installed, the surgeon will either install it through the nose leading into the stomach or directly into the stomach wall. Patients are often put under anesthesia, so the procedure should be painless.

Is Using a Feeding Tube Safe?

Using a feeding tube on children is the subject of some debate. Some medical researchers suggest that their use can lead to complications, including choking, bacterial infections and accidental inhalation of the formula (aspiration). There is also the possibility of organ ruptures, depending on where the device was installed. Keep in mind that it will be necessary to regularly clean the point of entry and ensure your child does not disturb the tube. If the tube is damaged or dislodged, it will need to be surgically replaced.

Despite these risks, research has shown positive results from the use of a feeding tube for children with cerebral palsy. A study was conducted in 1999 to determine the survival rates of children with cerebral palsy who had surgically placed feeding tubes. Of the 61 children, 90% saw improvement in their quality of life. Although it can be hectic to keep up with the schedule of maintenance and nutrition monitoring, the work will pay off by providing your child with a long and healthy life.

Further Reading:

Feeding Tube – WebMD

Feeding Tubes – LiveStrong.com

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DIY Blenderized Diets for Tube Feeding

By Lee Vander LoopCP Family Network Editor
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Some children with severe cerebral palsy have feeding disorders which require tube feeding. Children who are unable to fulfill their nutritional needs using traditional feeding methods, those with oral motor skill dysfunction or children at risk for aspiration are typically candidates for tube feeding.
Often, doctors prescribe a commercial feeding tube diet, called an enteral formula, which has been specifically designed to meet a child’s nutritional requirements. However, parents still have the option to create their own blenderized diets with their doctor’s blessing. After all, homemade blenderized diets were the original tube feeding meals before the introduction of commercial formulas.
Any child with a feeding tube should be followed closely by a nutritionist, regardless of whether they’re on enteral feedings, blenderized diets or any other type of tube feeding regiment. Some parents may prefer a blended diet for their child, but are intimidated with the demands of researching calories, volume and nutritional content of a blended diet. It sounds like a daunting task, but many parents have developed their own easy, time saving techniques!

Is a Blenderized Diet Right for Your Child?

There are many factors to consider when deciding if a blenderized diet is the right choice for your CP child.
Pros:

• Diet can be customized for taste and nutritional need
• May be more cost effective then commercial formulas
• May be better tolerated then commercial formulas
• Can be customized to include a food group rich in any nutrients found lacking

Cons:

• May not provide all vitamin, mineral, fiber, hydration and caloric needs
• Can clog tubes
• Requires close monitoring and supervision by a dietician or nutritionist
• More time consuming than commercial diets

Recipe Sources

We’ve identified a few resources and recipes that parents can refer to when selecting the best blended diet for their child. One site is the Blended Food Resource Group at www.foodfortubies.com. This group provides tube-fed individuals with information, education and support regarding alternatives to commercial formula when medically appropriate.  In addition to their list of recipe suggestions and sample recipes, they highlight:
Pros and cons of a blended diet

• Important information to get started
• Blenders recommendations
• Tips to avoid clogs and guidelines for clog removal

Their forum offers a treasure trove of recipes and guidelines. I was especially impressed with this site when I noted that their sample recipes and forum recipes all provided exact caloric values of each ingredient.
One important factor I found mentioned over and over was the need for a high-speed mixer such as Vitamix, Blendtec or other blender capable of pureeing whole foods.
In the Ainsley Rae’s Blenderized Diet blog, a mom details important tips about how to use a variety of blenders and mixers, and provides guidelines for creating an Excel spreadsheet to accurately record your child’s diet and calories so that they can be reviewed by a nutritionist.

Sample Recipes

Breakfast Blend
1cup whole milk
1 2oz container stage 1 fruit
2 TBSP molasses
1/2 cup baby oatmeal with probiotics and dha
1 heaping spoon of greek yogurt
This makes about 375mls and appx 465cals… (1.2cals/ml)
The breakdown appx is 15g fat, 53g carbs and 12g protein.
Fruit Based Blend
1 tin banana & mango baby puree tin – 90cals
2oz avocado – 90 cals
2 T. cooked quinoa – ~50cals
1/2 t. probiotics
20mls yoghurt – ~20cals
2 t. olive oil 80 cals
2 T. baby rice cereal – 40cals
70mls rice milk – 46cals
+/- 2t. Agave syrup – 31 cals
Total 447 cals, 95%=425cals, therefore over 300mls = ~1.4cals/ml
1^st Blender Meal
1 avocado–350calories
1 pear–95calories
3oz of tofu–70calories
1 cup cheerios–150calories
1 cup whole milk–150calories
3tsp milk fortifier (dari-free)–70calories
2Tbsp flax oil–240calories
probiotic powder
Total calories = 1125

Additional Resources:

Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets
Blog: Mom backs real blended food for tube-fed tot
Blog: Mom blogs about her success with Blenderized Formula @ Homemade Blenderized Formula for G-Tube
Lucy’s Homemade Food Recipes for Feeding Tubes – Real Food for the Tube
Study: “Pureed by Gastrostomy Tube Diet Improves Gagging and Retching in Children with Fundoplication”
Meal Time Notions Products
Blenderized Diet
The Oley Foundation: “Making Your Own Food for Tube Feeding”

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