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If you've just learned that your child has eosinophilic esophagitis, you may be feeling a mix of emotions–relief from finally knowing what's causing his discomfort, but also concern about what lies ahead. Rest assured that at Boston Children's Hospital's Eosinophilic Gastrointestinal Disease (EGID) Program, we've treated lots of children with eosinophilic esophagitis. And unlike some EGID programs that default to tube feeding after a certain number or combination of food allergies have been identified, we work closely with you to come up with a tailored treatment plan that works for your child and your family.
How is eosinophilic esophagitis treated?
In most cases, we can take two approaches to treating your child's EE:
There are some medicines–particularly steroids–that are effective at treating eosinophilic esophagitis.
Can steroids cure my child's EE?
No, but your child is likely to experience remission (absence) of symptoms for as long as he takes them. As soon as he stops taking the steroids, the EE will come right back.
What are the long-term side effects of taking steroids?
Other than the risk of yeast infections (thrush) in the throat from swallowing them, so far no one knows for sure. You may have heard that steroids suppress the adrenal glands (the functions of which include producing testosterone and helping to regulate blood pressure), but short-term studies indicate that this is not the case. We can't yet say whether long-term steroid use could affect growth and bone density.
When would EE be treated with medicine?
Sometimes we use medicine as a kind of treatment bridge while we try to figure out what foods your child is allergic to. And some families feel that they're unable to follow the diets recommended by the dietician. Depending on your child's allergies and where you live, it may be hard to find foods that his body can tolerate. Your child's age might also be a factor–sometimes teenagers don't want to adhere to a restricted diet, or when they go off to college, they find that it's not practical to do so.
While EE is a chronic condition, the vast majority of people who have it are able to eliminate their symptoms simply by avoiding the foods that trigger them.
There are three main approaches to dietary therapy: avoiding the foods indicated by the allergy test, the empirical food elimination diet, and a strict elemental diet.
Avoiding the foods indicated by the allergy test
With this approach, your child avoids between three and six foods (usually) for which he tested positive for allergies. Since dairy often doesn't get picked up by allergy testing, we often also remove milk from the diet, just to be safe.
Since allergy tests aren't 100% accurate, this approach relieves EE symptoms in 50-75% of patients.
Empirical food elimination diet (sometimes called the “six food elimination diet”)
With this diet, your child avoids the foods that are known to be the most common allergens, such as dairy, egg, wheat and soy. There are also a couple of other foods that are added to this list, depending on what is indicated by the latest research–another reason why it's important to be seen by specialists who are up-to-date with the current thinking about EE.
Strict elemental diet
Sometimes a stricter diet–called an elemental diet–is needed. This means that your child gets 100% of his nutrition from a special formula that's made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Even though the proteins that your child is allergic to are made of amino acids, the amino acids themselves are safe and won't cause a reaction.
This approach has a 95% success rate. Most of the time when we use this diet, we start off by restricting all food, and then gradually re-introduce foods until we discover which ones are causing your child's allergic reactions.
Children and adults who rely on an elemental diet either totally or even just partially can sometimes find it hard to drink enough of the formula to maintain proper nutrition, so we might use a special tube (called a “G-tube”) to introduce the formula directly into your child's stomach ("enteral feeds"). In extremely severe cases, nutrition may be administered directly into the blood stream ("parenteral feeds").
We know that none of these diets are particularly easy to follow, especially for kids. That's why at Children's, we focus on what your child can eat. Our dietician can give you lots of suggestions for putting together meals and snacks, new foods to try (such as quinoa and barley–whole grains that are versatile and easy to prepare) and even recipes.
In the beginning, while we're discovering which foods trigger your child's symptoms, you'll come in for visits maybe three or four times per year. Together with the doctors, you'll decide which, if any, foods to try to introduce back into your child's diet. Once we've established the best diet for your child, we'll see you for yearly follow-up visits–and of course, if you have any concerns in the meantime, we're here for you.
Should I tell my child's school about the diagnosis?
Absolutely. Your child's teachers and school nurse can be great allies in helping to protect your child's health by encouraging him to follow his diet at school and providing alternative snacks or treats when appropriate.
One thing to remember is that for many teachers–and many people in general–a “food allergy” is something that causes an immediate, dramatic reaction, and requires emergency medical attention. They may need to be educated about your child's condition. Our clinic has prepared a letter that explains EE and can be customized to reflect your child's exact situation that you can give to your child's school. With your permission, our social worker can collaborate with school staff on strategies to support your child's medical treatment plan at school.
There's no denying that food plays a large role in culture. For a family affected by severe food allergies, it may seem like the restricted foods are everywhere you look, including celebrations, dates, casual gatherings and even ballgames. It can be easy to feel frustrated and left out, especially for a child.
The good news is that food doesn't have to be a prominent part of our lives. Deciding how to retool family traditions to make them less food-centric can be a creative and fun activity that your family can do together. After all, inventing your own custom-made traditions is something many families never think to do. Remember that even though your child may be limited in what he can eat, you can still save some ‘safe' foods for celebrations and special occasions. Here are some other tips to keep in mind as you begin to chart your child's new nutritional path:
EE at school
Dining out with EE (from the American Dietetics Association)
It's estimated that around 12 million people in the United States have food allergies. That's a big incentive for companies to produce – and restaurants to serve – more ‘safe' foods.
EE and friends
These sites can provide more information and suggestions for life with EE:
Kids with food allergies
Food allergy and anaphylaxis network, including lunch suggestions
American Partnership for Eosinophilic Disorders
It's important to remember that while having a child with an EGID can feel isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There are lots of resources available for your family– here at Children's, in the outside community and online. These include:
Patient education: From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.
EGID support groups: The EGID Support Group of Boston holds its monthly meetings at Children's Waltham location.
Social work: Coping with a chronic medical condition can be stressful for the entire family. Our clinical social worker is available to provide support, assistance and resources during the course of your child's treatment.
On our For Patients and Families site, you can read all you need to know about:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”