If your child has eosinophilic esophagitis, or EoE, their symptoms can cause not only discomfort and pain, but confusion and feelings of isolation. Besides esophageal issues, for example, low energy levels due to malnutrition and a restrictive diet can make your child feel alone, especially when other kids are doing and eating things they can’t.
Helping children understand their condition can go a long way toward helping them cope with EoE, no matter their age.
Educate Yourself First
The best place to start is to learn all you can about EoE on your own. If you fully grasp the condition and how it feels to live with it, you can better empathize with your child and explain what’s happening. A few basic ways are:
- Attend all doctor’s visits.
- Learn about your child’s meds.
- Keep studying up on the disease and note new findings.
Talk Often to Your Child About EoE
After discussing EoE in general terms, the best path to fruitful communications with your child is to carefully listen to their questions. A common belief in younger children is thinking something they did, or didn’t do, caused them to get the condition.
If your child asks why they can’t eat certain things, for example, you might explain that their body sometimes thinks certain foods are dangerous and wants to fight them. When that happens, it can hurt in their esophagus or stomach. So it’s good to find those “red flag alert” foods, so they don’t have to have those reactions.
Around ages 10 to 12, kids are able to understand how other things factor in or trigger their EoE. They’re able to take in more facts. As they get older, it’s also key to go over the EoE basics at least once a year, so you can gauge how much your child grasps about it. This also gives you an opportunity to correct misunderstandings as well as keep tabs on when they’re ready to take more responsibility for their own care.
Kid-Sized Ways to Share About EoE
Help them learn more about the condition. There’s no shortage of educational material geared to children of all ages. For example, websites like Nemours KidsHealth have information about the human body and how it works that make learning about it fun. Children’s Hospital Colorado keeps a list of resources and reading material for both kids with EoE and their parents.
Put classmates in the loop. If they’re old enough, resources like videos and handouts for classmates can help them learn about the condition and, in turn, make your child feel more understood.
Extend support through school. Get your child’s school or other learning groups on board. For example, a 504 plan can help teachers and administrators support your child.
Stay on Top of Dietary Needs
A helpful first meeting after your child’s EoE diagnosis is with a registered dietitian. After allergy testing, an elimination diet, or time spent on a special-formula diet, this nutrition expert can tell you about safe and unsafe foods, help you spot hidden ingredients in foods, and create a nutritious meal plan for your child. Boost your nutritional knowledge with resources like the Academy of Nutrition and Dietetics.
Maintain a list of unsafe foods. Always keep a record of red-flag foods handy for when you decide to pop into the grocery store or check out a farmers market.
Be inventive. Even if you don’t consider yourself much of a cook, seeking out new recipes and tweaking them for your child and family can be fun and quell meal boredom. Making single-ingredient, fresh food from scratch banishes a complex ingredient list and is the best way to ensure your child’s food is safe for them. You don’t have to reinvent the wheel every night, either – look for recipes you can make ahead and freeze.
For ideas, check out organizations, such as the American Partnership for Eosinophilic Disorders.
Keep learning and sharing new info. Your child needs to grasp why they should steer clear of particular foods. Check in with your provider when you or your child have questions or want to clarify something.
Become an ingredient detective. Decoding food labels can be its own science. Keep these tips in mind:
- Read the whole list of ingredients. Major food allergens are listed in bold or parentheses.
- Check the label again the next time you purchase the same product, in case ingredients have changed.
- Ignore any claims or info on the front of the package. They’re not regulated by the FDA.
- Don’t forget to read what’s behind alerts such as “May contain” and “Contains.”
Signs Your Child Might Need Counseling
When your child is between ages 3 and 10, you can expect defiant behavior and some acting out. If it goes on after some time, though, a mental health professional can help them hone their coping skills, ease fears, and correct misconceptions they might be holding onto.
Younger children who need emotional support might:
- Resist going to the doctor and act up during appointments
- Obsess about their health and maybe the rest of the family’s
- Not get enough sleep due to worry
- Blame themselves
- Have outbursts at school
- Have unrelated symptoms like headaches
Research shows children might have more EoE-triggered behavioral and emotional problems as they grow older. Red flags in children about 10 to 18 are more likely to show up socially and emotionally. Look for:
- Social withdrawal
- Conflicts with friends and classmates
- Plummeting grades, which might be due to concentration problems or worrying
- Not enjoying activities they used to
- Feeling hopeless. For example, they might have a constantly gloomy or negative outlook.
Ask your child’s provider or pediatrician for help getting in touch with a therapist and tapping into other resources.
Help Your Child Handle Stress
Stress happens to everyone, but having a chronic disease heaps on more. Some ways to help open the lines and help your child cope are:
- Allow your child to express emotions, whether it’s frustration, anger, or unhappiness.
- Try to quell fears about the unknown. For example, if there’s a doctor’s appointment coming up or a new treatment on the horizon, explain in detail as much as possible about what they can expect and what will happen.
- Arrange for your child to meet and interact with kids with similar conditions.
- Keep an eye out for ways your child can make their own choices. For example, they might choose the day of an appointment based on other things that might be going on.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Mayo Clinic: “Eosinophilic Esophagitis.”
American Journal of Managed Care: “EoE Affects Many Aspects of a Child's Quality of Life, Advocate Says.”
Nemours KidsHealth: “Eosinophilic Esophagitis (EoE),” “Childhood Depression: What Parents Need to Know.”
American Academy of Pediatrics: “Living with a Chronic Illness or Disability.”
Cincinnati Children’s: “Frequently Asked Questions about Eosinophilic Disorders.”
American Partnership for Eosinophilic Disorders: “ABC’s of Food Allergies.”
Boston Children’s Hospital: “Eosinophilic Esophagitis in Children.”
Children's Hospital Colorado: “Eosinophilic Esophagitis (EoE) Diets for Kids.”
Child Mind Institute: “Mental Health in Kids With Chronic Illness.”
Journal of Asthma and Allergy: “Anxiety and Depression in Eosinophilic Esophagitis: A Scoping Review and Recommendations for Future Research.”
