Inherited Metabolic Diseases Nutrition Department

Nutrition management for children and adults with confirmed diagnosis of inborn errors of metabolism

IMDfacultysm2

Casey Burns, Sommer Gaughan, Laurie Bernstein

The Inherited Metabolic Diseases (IMD) clinic is comprised of a multidisciplinary staff, internationally recognized for their expertise in relation to the diagnosis and treatment of various metabolic disorders. 

The IMD nutrition clinic includes three metabolic nutritionists and is the only clinic in the Rocky Mountain Region providing comprehensive metabolic nutrition services.

Nutritional services provided at the IMD nutrition clinic include follow-up of abnormal newborn screening results, nutritional management and education for both inpatients and outpatients with inborn errors of metabolism (IEMs).

Metabolic Nutritionists

Laurie Bernstein, MS, RD, FADA, FAND
Professor of Pediatrics
Director, IMD Nutrition
Phone: (303) 724-2341
Email: laurie.bernstein@childrenscolorado.org

Casey Burns, RD, CSP, CNSC, Metabolic Dietitian
Phone: (303) 724-2343
Email: casey.burns@childrenscolorado.org

Sommer Gaughan, RD, CSO, Metabolic Dietitian
Phone: (303) 724-2348
Email: sommer.gaughan@childrenscolorado.org

Morgan Drumm, DTR, Dietetic Technician
Phone: (303) 724-2366
Email: morgan.drumm@childrenscolorado.org

Inherited Metabolic Diseases: Visual Aids - A Visual Overview of Metabolic Disorders

MCADD: A Guide for Patients and Families

  • Individuals with medium chain acyl-CoA dehydrogenase deficiency (MCADD) do not have a properly functioning medium chain acyl-CoA dehydrogenase enzyme. Therefore, their bodies are not able to correctly convert fats into energy.
  • The purpose of this book is to provide a resource to help answer some of the questions associated with MCADD.
  • MCADD Booklet order form

Galactosemia: The Diet

  • Individuals with galactosemia have a deficiency of the enzyme galactose-1-phosphate uridyltransferase (GALT) that helps to metabolize galactose. Therefore, they must follow a galactose-restricted diet. Galactose is part of lactose, or “milk sugar” and so milk must be avoided. Galactose is also found in other foods as bound or free galactose. In addition, galactose can be produced endogenously, meaning the body makes some galactose on its own.
  • The purpose of this book is to review the sources of galactose in the diet, describe which foods are included in the diet, and provide tips for healthy eating while on a galactose-restricted diet. The dietary recommendations presented in this booklet are intended for all ages. During infancy, the foods on the Acceptable Foods and Ingredient List can be introduced at an appropriate age to begin solids. It is not necessary to wait until a child is older to introduce allowed foods.
  • Download Galactosemia Order Form

Galactosemia: School Age Children

  • This book is intended for parents with school age children who have been diagnosed with galactosemia due to a deficiency of the enzyme galactose-1-phosphate uridyltransferase or GALT. This book will provide helpful information to make the transition to school and eating away from home.
  • Download Galactosemia Order Form

Galactosemia: For New Parents

  • This book is intended for parents with infants who have been diagnosed with galactosemia due to a deficiency of the enzyme galactose-1-phosphate uridyltransferase or GALT. This book will provide an overview of the diagnosis and familiarize you with the diet for galactosemia.
  • Download Galactosemia Order Form

Galactosemia: Making Healthy Choices Activity Book

  • This tool is used to increase learning about calcium, vitamin D, fats, fiber, ingredient identification, nutrition facts, and more.
  • Download Galactosemia Order Form

Galactosemia: Making Healthy Choices Cookbook

Download Galactosemia Order Form

Mile High Low Protein Cooking

  • This book was designed specifically for patients with PKU and other metabolic disorders that require a low protein diet. It is a collaboration of recipes from the families of the IMD Clinic at Children’s Hospital Colorado, as well as a professionally trained chef from Johnson and Wales University, Laura Gilsdorf.
  • Also available on CD
  • Download the Mile High Low Protein Cooking book order form

PKU Adventure Game - A fun learning game used to assess and increase knowledge of PKU

Download PKU Board Game Order Form

PKU Educational Tools

Simply More Phe More Choices: Think Healthy!

An educational tool for patients and their families when selecting healthy foods on a phe-restricted diet.

Modules offered include:

  1. More Phe More Choices: Think Healthy! The Foundation
  2. More Phe More Choices: Think Healthy! Early Childhood ~ Sample Menu
  3. More Phe More Choices: Think Healthy! Teenagers ~ Sample Menu
  4. More Phe More Choices: Think Healthy PKU and Pregnancy ~ Sample Menu

Download Simply More Phe More Choices: Modules Order Form

MMA/PA Module

  • An educational tool for patients and their families with methylmalonic acidemia or proprionic acidemia when choosing healthy foods on a protein restricted diet.
  • Download MMA/PA Order Form

Daily Guides

A tool for patients and their families when completing diet records.

Guides offered include:

Glutaric Acidemia
MSUD
Protein Limiting (Urea Cycle)
MMA/PA
PKU

Penny the Penguin has PKU

  • Winner of the 2014-2015 Creative Nutrition Education Award by the Academy of Nurition and Dietetics Pediatric Nutrition Practice Group, Penny the Penguin has PKU, is a children’s book aimed at helping children with their “diet for life” journey.
  • Click here to order Penny the Penguin has PKU

Genetic Metabolic Dietitians International

  • Membership provides opportunities for professional education and research, as well as networking and peer support.
  • Click here to learn more

Setting Up Your Low Protein Kitchen

  • “Setting Up Your Low Protein Kitchen is a practical . . . and fun . . . resource for anyone following a low protein diet.” Sandy van Calcar, PhD, RD. University of Wisconsin
  • Click here to learn more

The Simplified Diet

Download Simply More Phe More Choices: Modules Order Form

Location

The Low Protein Food Store is located in:

Children's Hospital Colorado
Outpatient Pavilion, 2nd  Floor
Room # B2102
13123 East 16th Avenue
Aurora, Colorado 80045

Store Telephone: (720) 777-9811

Hours of Operation:
Monday: 10:00 am - 12:00 pm

Orders

To place an order, please call:
(303) 724-2362 or (303) 724-2338

Print a copy of our Low Protein Food Store order form (.pdf)

Please send completed Low Protein Food Store order forms to:
Children's Hospital Colorado, IMD Clinic
13123 E. 16th Avenue, B153    
Attn: Nutritionist
Aurora, CO  80045  

COURAGE CLASSIC - GENE TEAM

What is The Courage Classic?

A renowned cycling event in Colorado since 1989, the Courage Classic is a two-day journey fueled by individual and team fundraising efforts that benefit Children’s Hospital Colorado. Thousands of cyclists, hundreds of volunteers, and several sponsors and friends participate each year to support the greatest needs of Children’s Hospital Colorado. Beginning and ending in Copper Mt Resort, this 157-mile course through Summit County during the summertime makes it one of the most picturesque cycling tours in the state.

The Gene Team

This amazing team was created and has been captained by Laurie Bernstein, MS, RD, FADA since 1999. Our mission is to support the incredible patients and families of the Clinical Genetics and Metabolism section. As the team continues to grow Morgan Drumm, DTR and Sommer Gaughan, RD, CSO plan to join Laurie as co-captains for the upcoming 2021 ride year. Riders of this team include clinicians, patients, family members, friends, and sponsors. The Clinical Genetics and Metabolism section provides medical and nutrition management to patients across Colorado and Wyoming. Money raised by The Gene Team has helped to provide life sustaining formula, specialty medical food, family conference attendance, camps, educational tools, ropes course, and research. Passion and dedication to the children and families of the Clinical Genetics and Metabolism section has driven The Gene Team to raise  more than $1.25 million over the past 20 years.

Look for our wonderful jerseys and swag along the course…

Registration and Donations

For more information about the ride, including registration and donation information, click here.


METABOLIC CAMP IN WYOMING

What is Metabolic Camp?

The IMD nutrition team hosts an annual metabolic camp for patients and their families. Our camp was established in 2005 and is supported by our generous donor: The Gene Team. Additional sponsors are Nutricia NA, Vitaflo USA, and Ajinomoto Cambrooke. Camp offers a magical opportunity for patients to make connections and new friends with their peers who are also living with a similar metabolic disorder. Additionally, parents can share their journey with other parents, giving them a chance to create a support system of their own.

Metabolic camp is held at the Vee Bar Guest and Dude Ranch near Laramie, WY. While at camp, patients and parents get to experience horseback riding, hiking, fishing, hayrides, art projects, culinary experiences, scavenger hunts and roping. We also share the emotional journey of chronic disease in a safe and fun environment. Patients and parents are given a truly rare opportunity to attend camp without the worry of what foods will be available for them/their child to eat. All meals are prepared by our esteemed low pro parent chef, camp attendees and staff and include a plethora of foods that fall within their diet restriction. Patients pack their clothes and medical food and then the IMD nutrition team takes care of the rest.

What is Eat Right Stay Bright?

Eat Right Stay Bright is an anticipatory guidance tool, developed by Children's Hospital Colorado to aid healthcare professionals in the treatment of patients with PKU.

To download chapters click here:


Each chapter has sections that include:

  • Clinic Encounter Check Lists
  • Experiences and Thoughts
  • Teaching Aids and Handouts
  • Resources