CHOC Leads the Way in Implementing Food Standards for Dysphagia Patients

CHOC Children’s has emerged as a leader in implementing a new global standard for assessing food and liquid consistencies for patients with swallowing difficulties.

CHOC was one of the first pediatric hospitals nationwide to implement the International Dysphagia Diet Standardization Initiative (IDDSI), which aims to establish a standardized system of measuring and labeling the thickness of food and drink.

The goal is to ensure patient safety and improve treatment outcomes, say Jennifer Raminick and Danielle Monica, two CHOC speech language pathologists who spearheaded the system’s adoption.

Established in 2013 by a group of dysphagia specialists, IDDSI was created to standardize descriptions, consistencies and terminology for diet modifications for patients of all ages, locations and cultures.

The initiative is a marked departure from previous guidelines that relied on ambiguous labels and descriptions that often varied across institutions and providers, and required specialized, arcane equipment to measure food consistency.

IDDSI framework indicators and descriptors.
(c) The International Dysphasia Diet Standardisation Initiative 2016 @http://iddsi.org/framework/.

Conversely, IDDSI guidelines are simple and clear; testing is easy and takes 10 seconds or less; and testing tools are easily accessible to providers and at-home caregivers, Danielle and Jennifer say.

Here’s a brief explanation of the flow testing process to assess a liquid’s thickness: Cover the spout of a 10-mL syringe and fill it with the liquid. With a stopwatch in hand, open the spout for 10 seconds, and then stop the flow. The amount of substance remaining in the syringe is then compared to a rubric to gauge its consistency.

If 1 to 4 mL of the substance remains in the syringe, it is considered of “slightly thick”; 4 to 8 mL remaining is considered “mildly thick”; 8 to 10 mL is “moderately thick” or liquidized; and a substance with 10 mL remaining is “extremely thick” or pureed.

Beyond those categories, food is assessed and labeled as, “liquidized” “pureed” “minced and moist,” “soft and bite-sized” or “regular.” These categories are determined by how the food flows off a spoon or fork, or by measuring a food particle against a ruler.

To implement the program house-wide, the rehabilitation services team partnered with several other departments and disciplines.

Jennifer and Danielle worked with CHOC’s Clinical Nutrition and Lactation department as well as the food service team to create a specific menu for dysphagia patients. It included limited options for each level of consistency and easy-to-follow recipes with three ingredients or less. All food is made from scratch.

The rehabilitation services team developed curriculum for multi-level education of current and new dysphagia therapists, physicians, nursing, dietitians, and food service staff members.

Learn more about rehabilitation services at CHOC.

Gluten-Free Diet: What Patients and their Families Should Know

By Dr. Bassam Younes, pediatric gastroenterologist at CHOC Children’s

In recent years, gluten-free diets have risen in popularity and gluten-free products become more readily available—but not everyone who puts themselves or their children on a gluten-free diet has a medical reason for doing so. Here’s what your patients and families should know about this widespread diet:

Shouldn’t everyone just go gluten free?

Many people assume that since gluten can have such strong negative effects on some of us, that it would be safer if we all just avoided gluten. Wrong.

Gluten-free foods may be safe to eat, but they’re not calorie-free. Many gluten-free foods and snacks are higher in fat and calories. Also, very few gluten-free products are enriched with essential vitamins and minerals that most gluten-containing products contain. This means if you’re on a gluten-free diet not managed by a registered dietitian, you could be missing out on essential nutrients your body needs. At CHOC, our team of pediatric gastroenterologists work in tandem with registered dietitians to care for children who require a gluten-free diet.

Dr. Bassam Younes, pediatric gastroenterologist at CHOC

What is gluten?

Gluten is a general name for the proteins found in wheat, rye, and barley and triticale (a cross between wheat and rye). It can be found in many types of foods, but is primarily made up of two different types of proteins:

  • Gliadin– gives bread the ability to rise
  • Glutenin– responsible for dough’s elasticity, acting as a glue to hold the food together, affecting the chewiness and maintaining the shape of baked products

Here’s a few cases where I would recommend a gluten-free diet to my patients:

Celiac disease

If you are diagnosed with celiac disease, it means you have an autoimmune reaction to gluten. Whenever you eat something containing gluten, your small intestine is hyper sensitive to that gluten, which leads to difficulty digesting food. Some common symptoms of celiac disease are diarrhea, decreased appetite, stomachache and bloating, poor growth, and weight loss.

Many kids are diagnosed with celiac disease when they’re between 6 months and 2 years old, which is when most kids get their first taste of gluten in foods. Girls are twice as likely to have this disorder than boys.

For some people, the problems start slowly and the symptoms may be terrible one week and not as bad the next. Because of this, some people aren’t diagnosed with celiac disease until they’re older. The problem is chronic, which means that although symptoms may come and go, people who have celiac disease will always have it.

If celiac disease is not treated, patients will develop weight loss and malabsorption (a condition that prevents the absorption of nutrients through the small intestine).

No one is sure why celiac disease happens, but it appears to run in families. You have a 5 percent to 10 percent chance of getting celiac disease if someone in your family has it. Others at higher risk for celiac disease include those with Type I diabetes, an autoimmune thyroid or liver disease, Trisomy 21 (Down syndrome), Williams syndrome, Turner syndrome, IGA deficiency or juvenile chronic arthritis. If your child falls into this at-risk group, they should be tested for celiac disease even if they don’t currently show symptoms. Celiac disease can harm the digestive system if no obvious symptoms are present.

Some children with celiac disease do not respond to the Hepatitis B vaccine. They will respond to the vaccine once they are on a gluten free diet. If your child was vaccinated for Hepatitis B prior to their celiac disease diagnosis and starting their gluten-free diet, they may need to be revaccinated for Hepatitis B. Consult your pediatrician about your child’s vaccination history.

In addition to a complete medical history and physical examination, diagnostic procedures for celiac disease may include blood work or a biopsy.

The only treatment for celiac disease is a lifelong adherence to a strict gluten-free diet.

Wheat allergy

You might be hypersensitive to wheat proteins without having celiac disease. People living with a wheat allergy have an immune reaction to the proteins found in wheat. A type of white blood cell attacks the wheat, alerting the body that there is a problem. Reactions can occur within a few minutes to a few hours, and can include nausea, abdominal pain, itching, swelling of the lips and tongue, trouble breathing or anaphylaxis. People with wheat allergies cannot ingest wheat, but they have no trouble ingesting gluten from non-wheat sources.

Children with a wheat allergy may eventually outgrow it, but the only treatment is eating a wheat-free diet.

Non-celiac gluten sensitivity

Non-celiac gluten sensitivity is not well-defined, but it is not an autoimmune response (like Celiac disease) or immune response (like a wheat allergy). There are no tests to diagnose a gluten sensitivity, but your doctor can do a biopsy or allergy test to rule out Celiac disease and wheat allergy. If a child’s symptoms improve by following a gluten-free diet, then gluten sensitivity may be diagnosed.

The only treatment for non-celiac gluten sensitivity is adhering to a gluten-free diet.

Learn more about pediatric gastroenterology at CHOC.

CHOC Children’s and Thompson Foundation Announce New Autism Center

CHOC Children’s and the William and Nancy Thompson Family Foundation (Thompson Family Foundation) recently unveiled a new collaboration that expands our region’s capacity to serve children with autism spectrum disorders (ASD) and their families. The Thompson Autism Center at CHOC Children’s, named in honor of a $10 million founding gift, will be devoted to evaluating children as early as possible to promote better outcomes; engaging children whose behaviors diminish quality of life for them and their families; and establishing a long-term support system for children with complex care needs.

Bill and Nancy Thompson

Set to open in early 2019, the Thompson Autism Center will also, through a partnership with Chapman University, assist families in navigating the education system from preschool to college. In support of the Thompson Family Foundation’s vision to bring hope to children with ASD and their families, the Thompson Autism Center will participate in national research networks.

“A national leader, the Thompson Family Foundation has earned a stellar reputation for expanding services, research, education and advocacy for children with ASD and their families. We are grateful for their generous support and their commitment to enrich so many lives here in Orange County,” said CHOC Children’s President and CEO Kimberly Chavalas Cripe.

The Thompson Autism Center will focus on three high-need populations:

  • Early intervention has been shown to significantly improve the development of basic cognitive, relational and communications skills; however, most children are not diagnosed with ASD until their fourth birthdays. The Thompson Autism Center will assess, treat, develop care plans and provide follow-up services for undiagnosed children, ages 1 – 6.
  • Some children with ASD communicate with negative behaviors   such as aggression and self-injury, resulting in physical, emotional and social impacts on them, their parents and siblings. The Thompson Autism Center will partner with families to provide a multi-tiered intervention program.
  • Epilepsy, sleep disorders, gastrointestinal issues and other medical problems commonly occur in children with ASD. The Thompson Autism Center will provide comprehensive, interdisciplinary care and family support services to address ASD and its common co-occurring conditions.

“We take pride in collaborating with institutions and health care professionals who share our vision to dramatically improve the lives of children with autism and other neurodevelopmental disorders and their families, “said Bill Thompson, co-founder, Thompson Foundation. “Our collaboration with CHOC Children’s will complement and expand on the work already being done in Orange County, making a lasting impact on the community and bringing hope to children and families affected by ASD.”

The Thompson Autism Center will be located at 170 S. Main Street in Orange, only a few blocks from CHOC’s main hospital campus. The two-story, approximately 20,000-square-foot facility will be designed by FKP/CannonDesign, an architectural and design firm with national experience in neuroscience, brain and autism projects at children’s hospitals.