Category Archives: Patient Care

DIY Blenderized Diets for Tube Feeding

By Lee Vander Loop
CP Family Network Editor

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

1st 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

The Oley Foundation: “Making Your Own Food for Tube Feeding”

 

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Feeding Tubes for Nutrition and Medication

By John Lehman

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.

Types of Feeding Tubes

There are a variety of feeding tube types and devices.  Before installation of a feeding tube, you should discuss all the options with your child’s physician.

  • Mic-G Tubes – MIC G tubes are sometimes used as primary (initial) tubes. They have a balloon – subsequent tube changes can be done in the clinic or at home
  • Mic-Key tubes – MIC KEYs are a balloon-type device as well. These tubes last anywhere from 3-6 months  (depending on many factors).They are most often changed in the clinic or at home once families are comfortable with the process.
  • Peg Tubes – A PEG feeding tube can last for 1-2years. You can discuss changing to a lower profile feeding tube after 3 months. Most children are admitted for daycare surgery to have the PEG tube removed.
  • Bard buttons – A mushroom-type device that are most often changed in a clinic setting or operating room because we believe removing and replacing the device can be uncomfortable. Some children tolerate the tube changes in clinic without sedation, while others require medication to help them with the tube change.
  • NG Tubes or Nasogastric – This tube is inserted through the nose and feeds into the stomach.
  • Nasojejunal tube or NJ-tube: This tube is once again inserted in through the nose but it is guided further down past the stomach and into one of the upper parts of the intestine called the jejunum.
  • Jejunostomy or J-tube:  This tube is placed through the abdominal wall but instead of going into the stomach it goes directly into the jejunum.

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. G-tube Placement Alternatives include:

  • Stamm gastrostomy – open surgical procedure
  • Janeway gastrostomy – laparoscopic procedure
  • Percutaneous Endoscopic Gastrostomy (PEG) – endoscope or image-guided radiography to insure proper g-tube placement

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.

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 Tube Awareness Foundation

North American Society for Pediatric Gastroenterolgy, Hepatology and Nutrition

GI Kids – Children’s Digestive Health Information for Kids and Parents

GI System Tests

Oley Foundation – Troubleshooting Guide for Tube Feedings

American Society for Parenteral and Enteral Nutrition – Information for Patients

Glossary of Terms

 

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Adaptive Seating Devices for Children with CP

Technically speaking, adaptive seating is defined as “modifications to seating devices to improve sitting posture and/or postural control in mobility-impaired individuals.” In layman’s terms, this means your child may use a special desk or wheelchair that has been personalized to meet their needs. This chair may involve features like external supports, “saddle seating,” adjustable seat depth, and so forth. There are several different types of adaptive seating devices.

Common Types of Adaptive Seating Devices

Saddle Seats (Bolster Chairs)

These narrow seats allow your child to sit in “saddle position.” Recommended for children with spastic or athetoid CP who experience stiffness in their legs, saddle seats help maintain hip flexion. Bolster chairs are considered a safer seating alternative for kids who sit on the floor with their legs beneath them (“W-sitting”), which can cause muscle contractures and skeletal deformities.

In bolster chairs, pelvic and foot supports maintain bodily alignment, freeing the hands for activities – and preventing loss of posture when the child moves. The adjustable foot supports keep the hips and knees at right angles, so the child is always centered over the base of support.

Seat Inserts

Seat inserts range from elaborate biofeedback devices to simple contoured foam pieces. Contoured foam seating (CFS) is a popular option because it is affordable, easy to transport, and simple to modify.

Built with an eye for skeletal alignment, CFS inserts hold the pelvis in a neutral position. These inserts are thought to increase postural stability and sharpen somatosensory feedback – meaning the child’s perception of bodily sensations (like pressure and warmth) becomes clearer.

External Supports

There are a variety of external support features on special needs chairs for children, but the most common is the corner chair. Corner chairs assist with visual scanning, breathing, eating, and development of arm mobility; they are ideal for children who lack postural control of the head, neck, or trunk.

The back of the chair is V-shaped rather than straight, and the seat can be lifted or lowered. A raised seat promotes thigh alignment, reducing both tightness in the hamstrings and spasticity in spinal and pelvic alignment. A lowered seat allows the child to relax with legs extended.

Corner chairs often come with abductors, or rectangular cushions that are placed between the distal femurs to ensure hip alignment. The abductor, in conjunction with the seatbelt, helps prevent the child from sliding or pushing out of their chair.

Some adaptive chairs are similar to corner chairs, but with one key difference: they have a straight back, rather than a V-shaped back. These seats are ideal for children who struggle less with head and neck control, but more with hip adduction. Straight-backed adaptive chairs are often recommended for kids who experience undue rotation stress on their femoral heads.

Some adaptive chairs offer a pelvic femoral stabilizer – a vertical, padded board that extends across the front of the knees, keeping the child positioned firmly on the seat.

Benefits of Adaptive Seating Devices

Adaptive seating devices are believed to provide skeletal stability, thus improving postural control. Postural control allows children to develop heightened functional ability – particularly mobility of the arms, grasping, visual scanning and tracking, and especially self-feeding. These devices are particularly useful in the development of self-feeding skills because they hold the pelvis in a neutral position, providing a secure foundation for the rest of the spine. Altogether, this promotes trunk alignment, which both frees the child’s hands and allows for proper digestion.

Adaptive seating is also associated with decreased risk of spinal deformity. In some cases, these devices can promote the correction of existing scoliosis in children with CP.

Researchers commonly observe that individuals who use adaptive seating devices often experience increases in social interaction, occupational satisfaction, and performance of the activities of daily living (ADL). Many of these improvements persist even after the device is removed.

One study suggested that regular use of adaptive seating devices can “prevent deterioration of [an individual’s] measured skill set over a period of five years.” This means that, in addition to increasing function and posture during use, these devices can help “lock in” existing abilities and result in cumulative improvement over time.

Studies About the Benefits of Adaptive Seating Devices

Dozens of studies about the benefits of adaptive seating devices have been conducted since the 1980s, but their findings have varied widely. At the end of 2008, the American Physical Therapy Association (APTA) oversaw a comprehensive review of these studies’ methods and results, which was published in their pediatric journal.

APTA concluded that the devices seem to help manage impairments associated with CP and can improve overall function. They noted that quality research on whether these devices truly improve postural control is limited, and the results of this research have been mixed.

Research into the benefits of saddle seats yielded mixed results – some children experienced improved mobility and posture, while others did not. Seat inserts, external supports, and modular seating systems produced more uniformly positive findings, with the majority of children demonstrating improvements. All devices – especially saddle seats and seat inserts – seemed to bolster social skills and ADL performance to some degree.

Nearly all adaptive seating devices showed positive results moreover, APTA concluded – but the improvements were rarely drastic. Anecdotal evidence for the benefits of these devices, however, is strong; an overwhelming majority of families report substantial improvements in their child’s performance when the child is using an adaptive seating device.

For more information about the implications of various seat inclinations, see Proper Positioning for Children with CP.

Sources

Pediatric Physical Therapy Journal:  Effectiveness of Adaptive Seating on Sitting Posture and Postural Control in Children with Cerebral Palsy

E-Special Needs:  Adaptive Classroom Seating and Proper Positioning

Aubrey Bailey for the Houston Chronicle:  Adaptive Equipment for Kids with Cerebral Palsy for Feeding Themselves

Rifton Adaptive Mobility and Positioning Blog – Adaptive Seating:  Evidence for Practice

 

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