The FPIES Handbook

The FPIES Handbook is now available for purchase! It is my hope that this book about Food Protein-Induced Enterocolitis Syndrome will help many families to improve the quality of life for their child, and thus their whole family.

Food allergies of the digestive tract are on the rise; one of the most serious among them is FPIES. What happens when a family doctor, a registered dietitian, and an FPIES support group leader – all mothers of children with FPIES – work together? You get a must-have resource for FPIES families. This book is packed with anecdotal experiences, encouragement, and scientific research. It presents FPIES in a way that it has never been presented before in hopes that it will leave you feeling encouraged, educated, and ready to manage your child’s condition. For the parents experiencing FPIES with their children, knowledge can be power; may you never again feel as scared or as alone!

How to get your copy:
Paperback on Amazon

 

Thanks to everyone who helped make this book a reality. February 2018 I started the outline, and the eBook as finished and on Amazon by June! It’s been an incredible few months and I never could have done it alone. Special thanks to Dr. Eva Cesnek for her help with writing and medical accuracy. For a listing of the dozens of other individuals who had a role in producing the FPIES Handbook, please see them Acknowledgements.

Below is the table of contents so you can see how comprehensive this book is. I’m really proud of the team that came together to produce this, and I hope many families are able to benefit from it. If you are in need of this book, and cannot afford it, please send me an email.

 

 

TABLE OF CONTENTS

• Purpose of this Book and Disclaimer
• Foreword by Heather Martin, RD, LD

PART ONE: INTRODUCTION

Welcome! Your child has just been diagnosed with FPIES (food protein-induced enterocolitis syndrome)! What does that mean? What is FPIES? What do I need to know about food protein? These questions will be addressed in the following chapters in Part One: Introduction.

• Introduction: What is FPIES?
• Introduction: FPIES-It Is All About The Food Protein

PART TWO: DIAGNOSIS

Wait! Are you sure it is FPIES? If you are like most parents whose children were just diagnosed with FPIES, you may still be in shock over the diagnosis. The diagnosis was probably delayed and occurred only after your child had multiple FPIES reactions. What does an FPIES reaction look like? What is the difference between an acute FPIES reaction and a chronic FPIES reaction? Why do so many medical professionals miss this diagnosis? What are some of the medical conditions that doctors mistake for FPIES? These questions will be addressed in the following chapters in Part Two: Diagnosis.

• Diagnosis: Help Me Identify What Is and Is Not FPIES

o   Acute FPIES
o   Chronic FPIES
o   Food protein-induced proctocolitis
o   Food protein-induced enteropathy
o   IgE-mediated anaphylactic food allergy
o   Heiner syndrome
o   Eosinophilic gastroenteritis
o   Infections of the digestive tract
o   Cyclic vomiting syndrome
o   Enterocolitis resulting from Hirschsprung’s disease
o   Celiac disease
o   Inflammatory bowel disease
o   Small intestinal bacterial overgrowth
o   Mast cell activation syndrome
o   Normal baby stools and spit up
o   Necrotizing enterocolitis
o   Atypical acute FPIES
o   Lactose deficiency
o   Galactosemia

• Diagnosis: How Do You Get an FPIES Diagnosis?

o   Diagnostic journeys for the two co-authors
o   Diagnostic symptom log
o   Appointments with primary care providers
o   Appointments with specialists
o   Confirmatory tests for FPIES

PART THREE: MEDICAL VISITS
After you have a diagnosis, what happens next? Who will be on your child’s medical team for FPIES? What questions should you ask them? Will they want to do any testing? Will they put your child on any medications? These questions will be addressed in the following chapters in Part Three: Medical Visits.

• Medical Visits: The Medical Team and What to Ask Them

o   Registered dietician
o   Pharmacist
o   Feeding therapist
o   Pediatric gastroenterologist
o   Pediatric allergist
o   Functional medicine
o   Primary care physician
o   Differences between medical care providers
o   Finding a well-versed allergist or gastroenterologist
o   Questions to ask the medical team

• Medical Visits: Medications and How to Understand Them

o   Medications for acute episodes of FPIES

• Epinephrine
• Methylprednisolone
• Ondansetron
• Rehydration solutions

o   Medications for other times

• Cromolyn
• Dicyclomine
• Histamine 1 blockers
• Histamine 2 blockers
• Pancrelipase
• PRObiotics
• PREbiotics
• Proton pump inhibitors
• Serum-derived bovine immunoglobulin/protein isolate
• Medical Visits: Medical Tests and Which Ones Are Worth It

o   Oral food challenge
o   Atopy patch test
o   Overview of immunoglobulin E (IgE) testing
o   Food-specific IgE testing through blood work
o   Maximum pediatric blood draw guidelines
o   Food-specific IgE testing through a skin prick test
o   Other lab work
o   Other tests of questionable clinical value
o   “My experience with the oral food challenge”

PART FOUR: WHICH FOODS
Soon after you start visiting with your child’s medical team, you may hear the following:  avoiding food protein triggers, preventing additional acute FPIES reactions, finding nutritious foods, creating a nutritionally complete diet, and quickly expanding your child’s tastes and textures. These concerns will be addressed in the following chapters in Part Four: Which Foods.

• Which Foods: The Importance of Advancing a Child’s Diet at an Early Age

o   Complementary feeding
o   Flavor acceptance
o   Texture acceptance
o   Oral motor skills
o   Importance of a variety of different food tastes
o   Food neophobia

• Which Foods: Creating New Sensory Experiences with Food

o   Developmental stages of feeding
o   Food texture groups
o   Introduction of new tastes and textures without solid foods
o   Introduction of tastes and textures with only one safe food

• Which Foods: Initial Foods to Trial

o   Suggested stage 1 purees
o   Suggested soft finger and mashed foods
o   Implications of the Learning Early About Peanut Allergy trial

• Which Foods: List of High-Risk Foods

o   High risk list for both FPIES and IgE-mediated food reactions
o   High-risk list for IgE-mediated food reactions
o   High-risk list for FPIES
o   Latex food family
o   Lupines
o   Sulfites

• Which Foods: Choosing Foods Based on a Known Food Trigger

o   Animal products

• Cow’s milk
• Eggs
• Fish
• Shellfish
• Meat

o   Fruits and vegetables
o   Grains

• Wheat
• Rice

o   Legumes

• Any legume
• Peanuts
• Soy

o   Seeds
o   Tree nuts

• Which Foods: Food Avoidance and Special Diets

o   Food avoidance

• Pesticides
• Foods to avoid at an early age
• Organic, pastured, 100% grass-fed meat
• Meat raised without antibiotics
• High histamine containing foods

o   Special diets

• GAPS diet
• Autoimmune protocol diet
• Diet devoid of high-risk foods
• Food families
• FPIES food survey
• Which Foods: Questions to Ask the Medical Team about Advancing the Diet
• Which Foods: Nutrition

o   Calorie requirements
o   Protein requirements
o   Iron requirements
o   Additional nutrient requirements

PART FIVE: FOOD TRIALS
Your medical team may expect you to conduct food trials at home. What are they? How are they done? How do you monitor for a reaction? What do different symptoms mean? These questions will be addressed in the following chapters in Part Five: Food Trials.

• Food Trials: How to Do a Food Trial

o   Step-by-step instructions
o   FPIES symptoms food chart
o   Factors to consider when choosing a new food
o   When to start a food trial
o   How to present new food to a child
o   How much food to trial
o   Baking or cooking a new food
o   How long to trial a food before considering it safe
o   Different food trial methods
o   Faster ways to trial food

• Food Trials: Getting Symptoms to Baseline

o   Definition of baseline
o   How to achieve baseline

• Baseline on formula
• Baseline with breastfeeding
• Baseline on solid foods
• Inability to achieve baseline
• Food Trials: FPIES Symptoms Food Chart

o   Describing an FPIES symptoms food chart
o   What the FPIES symptoms food chart tracks
o   Various versions of the FPIES symptoms food chart
o   Symptoms noted on the FPIES symptoms food chart
o   How the FPIES symptoms food chart tracks baseline
o   How the FPIES symptoms food chart tracks nonspecific symptoms
o   How the FPIES symptoms food chart tracks acute FPIES
o   How the FPIES symptoms food chart tracks atypical FPIES

• Food Trials: Food in Non-Food Items

o   Food components found in non-food items

• Corn
• Cow’s milk
• Eggs
• Fish
• Peanuts
• Rice
• Shellfish
• Soybeans
• Treenuts
• Wheat
• Others

o   Cross-contamination of items by food allergen
Food Trials: Medications and Vaccinations that have Food Components
o   Medications
o   Vaccines that have food components
Food Trials: What to do During an Acute FPIES Reaction
o   FPIES-related vomiting
o   FPIES-related dehydration
o   FPIES-related diarrhea
o   Homework: Medical Letter
o   Treatment of Anaphylaxis (IgE-mediated allergic food reactions)
Food Trials: Monitoring for FPIES Resolution
o   Testing to see if FPIES has been outgrown
o   Ages for outgrowing FPIES
PART SIX: LIFE IMPACTS
As you live the life of an FPIES parent, you may notice just how much FPIES affects your day to-day life. Your finances may be affected. You may experience psychological stress. You may want to have another biological child but be worried that your next child will also have FPIES. Your child may develop feeding difficulties. These concerns will be addressed in the following chapters in Part Six: Life Impacts.
Life Impacts: Psychological Stress of FPIES
o   Postpartum depression
o   Stress reaction
o   Different stages of grief
o   Analogy of grief
o   Repercussions of having a baby with colic
o   Maslow’s hierarchy of needs
o   Feeling alone as a parent
o   Feeling like the medical profession was clueless
o   Feeling like FPIES was just really hard
o   Bullying in children with FPIES
o   Finding “you time”
o   Making new friends

• Life Impacts: Financial Stress of FPIES

o   Make a budget
o   Eliminate all non-essential spending
o   Ask for governmental help
o   Get your child evaluated by early childhood intervention
o   Appeal the medical insurance that says, “No!”
o   Write good insurance letters
o   Befriend your insurance company
o   Get prescription assistance
o   Get inexpensive medical care
o   Medicaid waiver programs
o   Advocate
o   Get your formula for less
o   Children’s Medical Nutrition Alliance
o   Coupons
o   Accept what is offered
o   Ask for costs up front
o   Reframe your perspective
o   Think outside of the box
o   Think of the rest of the world

• Life Impacts: Feeding Therapy

o   Feeding difficulties and FPIES
o   Knowing when your child needs feeding therapy
o   Evidence-based tool for evaluating your child’s feeding skills
o   Outpatient feeding therapy
o   Occupational therapy exercises to help with feeding
o   Oral motor skills training
o   Sequential oral sensory feeding therapy
o   Applied behavioral analysis mode of feeding therapy
o   Ellyn Satter approach to feeding
o   AEIOU approach to feeding
o   Picking the best feeding therapy for your child

• Life Impacts: Day-to-Day Life with FPIES

o   Father’s Day and Traveling by Anonymous
o   “Feeding tubes” by Arleen Hildebrand
o   “It gets better even if there are more diagnoses” by Amy Neyer
o   “Advice for the newly diagnosed” by Joy Meyer
o   “Maslow’s hierarchy of needs” by Nicole McClelland
o   “The blame game (teaching kids how to hate)” by Jenn Booth
o   “Advice from experienced FPIES parents” by Carrie Summers
o   “Take Charge” by S.L.
o   Other stories

• Life Impacts: Child Protective Services

o   Overview of Child Protective Services
o   “FPIES and Child Protective Services” by Anonymous

• Life Impacts: Daycare and School

o   Educating teachers and school staff about FPIES
o   Finding a strategy to communicate
o   Creating an emergency action plan
o   Being specific about FPIES symptoms that can mimic illness
o   Asking questions about meals and snacks
o   Discussing ways to avoid unnecessary exposure to trigger foods
o   Discussing ways to avoid exposure during arts and crafts
o   Helping our children to have a good experience
o   Documenting documents
o   Never feeling alone

• Life Impacts: Preventing FPIES in a Future Child

o   Prenatal environment
o   Early postnatal environment

PART SEVEN: CLOSING REMARKS
Finally, along the way on your FPIES journey, you will meet other parents whose children also have FPIES. Interspersed throughout this book, you will also read their stories. Then at the end of this book, you will get to the following chapter in Part Seven: Closing Remarks.

• • Closing Remarks: Resources
  • Closing Remarks: Glossary
  • Closing Remarks: Food Families
  • Closing Remarks: Bibliography