Category Archives: Patient Care

Patient-Centered Care: A Must Have for Our Kids

By Lee Vander Loop, Editor CP Family Network

When you read the words “Patient-Centered Care,” what comes to your mind? When I first encountered the phrase, I was confused. Shouldn’t all medicine be ‘patient-centered’ since it is about the patient, and if this is new, what was the approach before?

CP Research Study Seeks Parents & Caregivers from CP Community

These questions need answers. That’s why I was very excited about the nationwide study about patient-centered care. CPRN and CP NOW Foundation are embarking on a project funded by the Patient-Centered Outcomes Research Institute (PCORI) to help develop a community of people committed to the principles of patient-centered research for CP. Research CP is an educational series and agenda that will culminate in a one-and-a-half day workshop in Chicago that will bring together people from the CP community with clinician researchers to set a research agenda for cerebral palsy.

Best of all, they are asking parents and caregivers to participate and we’re honored to present this opportunity to our community. Registration for the first webinar is now live, so sign up today! A survey to collect top research questions and outcomes will be included in this project. The results of this survey will provide essential input for the workshop where participants will synthesize this input into a prioritized research agenda for CP. Completing this survey is an opportunity to have your voice heard in what’s important to you regarding the future of CP research.

Communication is Key with Doctors, Patients and Families

In 27 years of caring for my daughter with CP, I never heard the phrase “Patient-Centered Care” mentioned in conversations with a physician or clinicians. As I proceeded to research the topic, instances of doctor appointments with my daughter came to mind. As I reflected back on my 27 years of interactions with the medical community, I could easily identify appointments that reflected a ‘patient-centered’ approach and those that did not.

I was amused to discover that, although I was unaware at the time, many times I had forced the physician to have a ‘patient-centered’ approach in their interactions with me and decision-making issues regarding my daughter, through dialogue and communication. I had educated myself on my daughter’s multiple medical issues and easily communicated my concerns and questions to them.

Focus Turns Toward Patient-Centered Care in Medical Community

Before this initiative became a focus in the medical community, medicine was considered ‘physician-centered’ and doctors practiced a ‘community approach’ with little or no regard to a patient or parent’s individual needs or wishes.

The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Picker’s Eight Principles of Patient Centered Care defines the primary aspects of patient-centered care.

In the article ‘The Values and Value of Patient-Centered Care’, published in the Annuals of Family Medicine, the author describes Patient-centered care as a quality of personal, professional, and organizational relationships. I consider the most important word in that phrase to be ‘relationships’.

When meeting a new physician, there’s always an initial awkwardness and communication challenge. Since the foundation of ‘patient-centered care’ relies on communication and mutual respect between the child’s caregiver and physician, it’s imperative that these initial hurdles be overcome.

Parents Need to Embrace Vocal Role with Their Child’s Physicians

As parents and caregivers to special needs and often non-verbal children, we must be the voice for our children. We must establish a rapport with the physicians and clinicians who will aid us in the understanding; decision-making and resolving of the medical challenges so many children with CP face.

With the time constraints faced by physicians, it can be a challenge to develop the dialogue needed to establish the partnership that is the basis of a patient centered approach. Parents and caregivers can help this process by researching and obtaining as much information as possible about their child’s condition. Be prepared. Make a list of your questions and concerns. Don’t be afraid to ask questions! Physicians are not mind readers. It’s the parent’s role to educate the physician on their child’s individual needs. You are the most vital part of the team when making decisions regarding your child.

Throughout the years of caring for my daughter and interacting with the large array of doctors and nurses that helped me maintain her quality of life, my relationship with her primary care physician and specialists evolved. Our relationship had become not just one of partnership and solidarity, we had become family, and when it became evident that the end of my daughter’s life was near, they wept with me. They were my hero’s and will be for the rest of my days.

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”

 

Join Our Family

Sign up for our free e-newsletter for more blogs, articles, and news about CP kids and their families.

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

 

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

FREE MEDICAL AND LEGAL RESOURCES

The Cerebral Palsy Survival Guide is a free, state-specific resource list for everything from everyday activities to emergency situations.

BI-WEEKLY E-NEWSLETTER SIGN-UP

Sign up for our e-newsletter to receive the latest in CP news, resources and

LATEST BLOG POSTS

Biodex Includes Music Therapy in Its Cerebral Palsy Rehabilitation Treadmill

Daniela Semedo, PHD Biodex Medical Systems has developed the first movement rehabilitation treadmill for cerebral palsy that includes a music therapy component. The Gait Trainer 3 offers both audio and…

Read more

Cheney High Grad Seeks to Raise Awareness of Cerebral Palsy

Adriana Loya Via KWCH.com Like a proud parent, Gay Gower talks about her grandson's accomplishments. "For his use of technology with his chair, he received Infinitech outstanding technology achievement," she…

Read more