Brought to you by the American Gastroenterological Association

Parents and caregivers

Have you been told your child may have a condition called eosinophilic esophagitis (e-o-sin-o-FILL-ik uh-sof-uh-JIE-tis or EoE)? If so, you may understandably have a lot of concerns. How will EoE affect her growth and development? Will he be able to have a normal social life with his friends? How can I teach them to choose safe foods and avoid unsafe foods? What if he has symptoms when I’m not there to help? Will my child grow up to have a normal life that includes things like college, a job, and a family?

These are all valid concerns, and you are not alone in having them. But there’s good news: If you and your child learn what triggers your child’s EoE symptoms and what can be done to prevent them, your child can still do the things he or she enjoys while taking care of their health. We’ll show you how.

What is eosinophilic esophagitis or EoE?

Let’s start with the basics. Eosinophils are a type of white blood cell that play an important role in fighting certain infections in the body. The esophagus is the tube that connects the mouth with the stomach. Eosinophils are not normally found in the esophagus. But they can build up there, usually due to an allergic reaction, and cause swelling, pain and trouble swallowing. EoE happens when eosinophils build up in the lining of the esophagus.

Your child can learn how to take control of EoE.

By finding out what is causing your child’s EoE symptoms, you can reduce them so your child can start living a more comfortable life. He or she can still go to school, go out with friends, go away to college, start a career, travel…all the things you might hope for your child’s future. Treating — and more importantly, preventing — the allergic reactions that cause swelling and pain are the key to living a more comfortable life and vital to preventing EoE from causing permanent damage. EoE is a lifelong condition, but it doesn’t have to slow your child down.

 

Understand the causes of EoE

EoE is usually an allergic reaction to food or something else in the environment. Here are some of the things that increase the chance of developing EoE:

  • Food allergies. Allergies to certain foods can cause EoE symptoms, especially dairy products, eggs, soy and wheat.
  • Environmental allergies. Most people with EoE also have allergies to things like pollen, animal dander, mold and/or dust mites. Often people with EoE also have asthma, eczema or other allergies that cause a skin rash.
  • Family history. If you have family members with EoE, your child has a higher chance of having it, too.
  • Sex, race and age. EoE can affect anyone, but is most often diagnosed in white men.
  • Climate. People who live in a cold or dry climate are more likely to have EoE.

What does EoE feel like? Children with EoE often feel things like:

  • Trouble swallowing dry or solid foods, with a feeling like food is stuck in the throat or esophagus.
  • Sensitivity to food texture.
  • Recurring pain in the belly.
  • Heartburn.
  • Vomiting (throwing up).

 

It might be difficult to know what is causing these feelings. But if they happen to your child often, or are scary or distressing when they do happen, then it’s worth saying something and making sure your child sees a doctor to check it out.

If your child feels any of the things listed above and is also having trouble breathing or talking, see a health care provider (doctor, nurse practitioner or physician assistant) right away. Call 9-1-1 to get your child emergency care.

How is EoE diagnosed?

It can be a relief to find out what has been causing your child’s symptoms. If your doctor thinks that your child may have EoE, he or she will order certain tests to see what is causing the symptoms. Your child will most likely have:

  • A physical exam. Your child’s doctor will examine him or her and also ask questions about the symptoms: what they feel like, when they happen, what foods your child was eating when they happened, and how long they last.
  • Upper endoscopy. This is a test where a flexible tube with a camera at its tip is gently inserted into your child’s mouth and down the throat to take a look at the inside of the esophagus (the tube that connects the mouth to the stomach) to see if there is irritation and swelling. That might sound uncomfortable, but don’t worry: Your child will be given medication, so they are asleep and comfortable during the procedure. A doctor called a gastroenterologist — a specialist in the care of digestive diseases and conditions — will perform the endoscopy and also remove a tiny bit of tissue from your child’s esophagus (biopsy) to have it checked for white blood cells (eosinophils). A high number of white blood cells in your child’s esophagus suggests EoE. Learn more about what to expect during an endoscopy.
  • Allergy testing. Your child may have skin prick testing or blood tests to see what they are allergic to. These tests are used to check for environmental allergies that may be causing your child’s EoE symptoms, such as pollen, mold or animal dander. With skin prick testing, the skin is exposed to possible allergy-causing substances using a small needle, and a doctor or nurse sees how your child’s skin responds. A rash or swelling in the area indicates that your child may have an allergy to that substance.
  • Elimination diet. Since most EoE symptoms are triggered by allergies to certain foods, your child will have food allergy testing. This testing can take a while to complete. The health care team, which includes a dietitian, will have your child stop eating certain food groups and then gradually start eating each one again, seeing how they affect your child’s symptoms. This is called an “empiric elimination diet.” The most common food groups that are taken away and then re-introduced include milk, eggs, wheat, corn, soy, and sometimes nuts and shellfish. Sometimes endoscopy is performed again as foods are re-introduced to see how they affect the esophagus. Once you know what causes EoE symptoms, you can have your child avoid eating those foods so they can start feeling better. Learn more about the six-food elimination diet.

Learning your child has a condition that they will have for life may make both of you to feel frustrated, disappointed and angry. Your health care team knows this and will give you and your child emotional support along with medical care. Your care team may include a pediatric gastroenterologist and a dietitian, as well as nurses and others who are experienced caring for children with EoE.

As a young person with EoE, your child may feel socially awkward in having to eat specific foods, feel different from his or her peers, or wish they had more independence. These are all normal feelings. Encourage your child to speak up about their feelings and needs. Doing so will help them start learning to be an advocate for their own health and well-being.

There is no one-size-fits-all treatment for EoE. Your child’s health care team will create a treatment plan that is customized to his or her needs. The plan may include a mixture of medications and dietary changes, as well as follow-up endoscopies and biopsies to see how your child is responding to treatment.

  • Medications. Your child may take a steroid medication that is inhaled (such as fluticasone) or swallowed (such as budesonide) to coat and soothe the lining of the esophagus and reduce inflammation. Medications that reduce stomach acid may also be helpful. There is a new FDA-approved medication for EoE called dupilumab—a type of drug known as a “biologic.” It’s available for people 12 and older who weigh at least 88 pounds. It is given as a weekly injection.
  • Dietary changes. Making changes to your child’s diet is one of the most effective ways to decrease EoE symptoms. If you learn that dairy foods and wheat make your child’s symptoms worse, for example, your child will need to avoid eating those foods. A dietitian will explain which foods your child should not eat and which are considered “safe.” Over time, you and your child will get very good at knowing what they can have and what they’ll need to avoid.
  • Dilation. In people with EoE who develop scarring in the esophagus or who are not responding well to other treatments, the gastroenterologist may gently stretch (dilate) the opening of the esophagus to let food pass through. This is temporary treatment that is only used when absolutely necessary.
  • Feeding tube. In rare cases, a child with EoE may need a feeding tube to receive a special diet or formula to get enough nutrition and support growth and development.

You may find the following resources to be helpful for information and support

Online Resources and Communities

The American Partnership for Eosinophilic Disorders (Apfed) offers extensive online resources for people living with EoE. There is a special page for kids, a dedicated page for teens, information about middle and high school accommodations, and guidance on managing EoE at college.

The Campaign Urging Research for Eosinophilic Disease (CURED) provides valuable, reliable online resources, including stories from people living with EoE.

The EoSNetwork is a charity in the UK that provides resources for people living with EoE and other eosinophilic diseases.

Food Allergy Research & Education (FARE) provides resources for people living with food allergies.

Books

Danielle Travis. My Real-World Guide for Eosinophilic Esophagitis: A Guide to Helping Children, Parents, and Anyone Else Navigate Through the Thoughts and Feelings Associated with Eosinophilic Esophagitis.

Scott Sicherer. Food Allergies: A Complete Guide for Eating when Your Life Depends on It.

Robert A. Wood and Joe Kraynak. Food Allergies for Dummies.

Vesanto Melina, Dina Aronson and Jo Stepaniak. Food Allergy Survival Guide: Surviving and Thriving with Food Allergies and Sensitivities.

Marianne Barber. The Parents’ Guide to Food Allergies: Clear and Complete Advice from the Experts on Raising Your Food-Allergic Child.

How should my child transition from pediatric to adult EoE care?

Since EoE is a lifelong condition and most people who have it are diagnosed as children, there will come a point when your child becomes responsible for his or her own care and transitions to a doctor who takes care of adult patients. Generally, this happens between the ages of 18 and 21, depending on your provider. There are several things you and your child can do to start to advocate for their own health as they get older, such as:

  • Checking in themselves when you arrive for an appointment, rather than letting you, as the parent or caregiver, do it.
  • Making sure your child understands what their medications do and how to take them.
  • Learning how to identify safe and unsafe foods and prepare safe snacks to take with them each day to school or to social events.
  • Teaching your child to schedule their own appointments when they are approaching the end of their teens, or at least consulting them about their schedule when you make an appointment.
  • Teaching your child to schedule their own appointments when they are approaching the end of their teens, or at least consulting them about their schedule when you make an appointment.

There are legal factors regarding health care providers and insurance companies starting at age 18 that may affect your child’s transition to adult care. For example, your child will need to give you access to their health care information starting at 18 or may choose to work alone with their doctor. Speak with your child and a member of your care team to learn more about your personal situation. Help is available to make this transition as smooth as it can be. The goal is to connect with an adult care physician who can be a long-term care partner for your child for years to come.

How can my child do their best in school despite having EoE?

Communicate your child’s health needs to a teacher, nurse, guidance counselor or other trusted adult at school, and let them know if your child falls behind on homework, needs materials sent home or other accommodations, or can have a friend and/or tutor fill them in on any missed instruction. Ask for extra time or accommodations with testing, homework, class scheduling, assignment length and excused absences. Involve your child in these conversations, too, when they are in high school.

Work with school officials to:

  • Arrange for safe storage and administration of medications.
  • Secure private locations for nutrition support.
  • Ensure your child has access to drinking water.
  • Get accommodations for school-sponsored field trips and extracurricular activities.
  • Make arrangements for parent notifications and emergency contacts.
  • Ensure confidentiality of your child’s medical condition.

You can find additional resources on how to help your child do their best in school online.

How can I help my child become more independent and responsible as they get older?

As your child gets older, it is vital for them to become self-reliant and be a personal advocate for their own health so they can manage the daily decisions required of a person living independently with EoE. As they enter adolescence, you can have them practice skills such as:

  • Keeping a food diary.
  • Packing their own safe snacks for school or travel.
  • Ordering for themselves when you go to a restaurant together.
  • Taking their medications as prescribed.
  • Coordinating doctors’ appointments with you by having them tell you their schedule. This also gives them a say in the timing of the appointment.

Positive reinforcement is a great way to motivate them to learn and practice these habits. When they do tasks like those above, you may consider rewarding them with:

  • Being able to stay out an hour later than the usual curfew.
  • A special outing, such as a visit to a theme park, movie or arcade.


What should I do if my child rebels against the limitations of living with EoE, such as not taking medications or eating unsafe foods?

Risk-taking and rebellion are natural adolescent behaviors, but for someone with EoE, it can have serious consequences. Talk one-on-one with your child about what he or she is feeling and reinforce that these are not rules YOU are setting, but guidelines they must follow to be healthy. Your pediatrician or gastroenterologist is in a good position to discuss the importance of healthy behaviors with your child and work out an agreement with them. If your child screams at you or displays similar emotional behavior, give them some time and space to cool down before you respond. Acknowledge that they may be feeling angry and frustrated and that these are common and very valid feelings to have as someone living with EoE.

My child is getting ready to go away to college. How can we prepare for this transition?

Before they leave home for college, make sure your child has:

  • A full set of medications, complete with prescriptions for refills.
  • A plan for covering the cost of medications.
  • Copies of their health insurance card, medical records and care plan.
  • The next medical appointment scheduled.
  • • An emergency plan should your child need urgent care while he or she is away at school. The plan should also indicate whether or not your child’s medical information can be shared with parents or caregivers. Put together a comprehensive medical history that includes your child’s diagnosis, names and doses of medications, food and other allergies, prior surgeries, and names and contact information for doctors. This way if your child has a medical emergency or issue, he or she won’t need to call home to get it.

Also speak with officials at your child’s college regarding personal needs, such as dietary modifications and access to safe foods in the dining hall. Consider having a mini fridge in your child’s dorm room to stock safe foods that the dining hall does not supply or your child may want to have after dining hall hours.

Your child may wish to check out online materials where they can read about living on their own, managing dietary needs, and handling urgent issues while away at college.

See more answers to common EoE questions on our FAQ page.