At Children’s Hospital Boston, we understand that you may have a lot of questions when your child is diagnosed with an EGID:
- What is it?
- How will it affect my child long term?
- What can we do about it?
- Will my child be able to live a normal life?
We’ve provided some answers to those questions here, and when you meet with our experts, we can talk with you more about your child’s specific situation.
For many parents, their child’s diagnosis is the first time they’ve heard the word “eosinophilic,” let alone heard of eosinophilic esophagitis. With that in mind, here’s what you need to know about what “eosinophilic” means:
What’s an eosinophil?
An eosinophil is the least common of all white blood cells. Only a tiny fraction of your child’s blood cells are eosinophils.
What does eosinophilia mean?
It means that there’s a higher-than-normal level of eosinophils in your child’s blood.
What causes eosinophilia?
Lots of things can cause eosinophilia. In the United States and other developed nations, it’s most often caused by allergic reactions to food or to something in the environment.
What are eosinophilic gastrointestinal disorders (EGIDs)?
EGIDs are conditions caused by high levels of eosinophils in different parts of the gastrointestinal (GI) tract. Each EGID is named for the part of the GI tract where the eosinophils cluster:
- eosinophilic esophagitis – in the esophagus
- eosinophilic colitis – in the colon (large intestine)
- eosinophilic gastritis – in the stomach
- eosinophilic gastroenteritis – in the stomach and small intestine.
The itis suffix means “inflammation.”
Is there a cure for eosinophilic esophagitis?
Not yet. But we can help your child manage his condition with dietary recommendations and, if necessary, medications. Researchers at Children’s and elsewhere are working to gain a better understanding of these disorders.
What happens in eosinophilic esophagitis?
If your child has EE and eats something that he’s allergic to, eosinophils will migrate to the inner lining of his esophagus, and attach themselves there. This can cause his esophagus to swell up, making it difficult to swallow and increasing the chance that food will get stuck there. But this doesn’t happen right away – your child may feel fine after eating something he’s allergic to. It can take hours or days for the allergic reaction to appear. This means it’s often hard to know which food caused the reaction.
What complications are associated with EE?
Complications associated with EE include:
- food impaction (getting food stuck in the throat) that requires a trip to the emergency room
- eating disorders can develop if eating is painful
- scarring and narrowing of the esophagus that may require surgery to fix
- feeding aversion may develop in toddlers, so that even if their EE is being managed, they may still not want to eat because they associate eating with feeling uncomfortable
Luckily, the earlier your child’s EE is diagnosed and treated, the less likely he is to develop complications.
In the United States and other developed nations, EE is most often caused by allergies. If your child is allergic to something (called an “allergen”), it means that his immune system reacts as though the allergen is more dangerous than it actually is. The irony is that sometimes it’s the reaction that causes the damage.
Researchers aren’t clear on why some people have allergies and others don’t, but there seems to be a strong hereditary component. Allergies are extremely variable, too – your child might be extremely allergic to something, or have an allergy so mild that he never notices it.
While each child may experience symptoms differently, common signs of EE include:
- difficulty swallowing (dysphagia)
- food getting stuck in the throat (impaction)
- chest pain
- poor weight gain
- refusing to eat (especially in toddlers)
- increased sensitivity to food texture – some kids might dislike “mushy” food like bananas, others might dislike hard, crunchy food like carrots.
- reflux in babies that doesn’t respond to medications
It’s important to remember that none of these symptoms points definitively to EE – they’re also often found in gastroesophageal reflux disease (GERD) and can even occur in healthy children and adults. That’s why it’s important that your child is diagnosed by specialists who have a lot of experience with EE and how it appears in children.
Q: Is there a cure for eosinophilic esophagitis?
A: Unfortunately, a cure for EE has yet to be found. Our experts can help your child manage his EE with dietary recommendations and, if necessary, medications.
Q: Could my child outgrow EE?
A: Researchers aren’t quite sure yet – since it’s a fairly new disease (first described 20-25 years ago), no one really has long-term data about this. But there have been reports of people having outgrown allergies to one or two of the foods that were causing their EE.
Q: Will my child be all right?
A: Yes. He’ll most likely need to make some dietary and lifestyle changes, but EE isn’t life-threatening and it’s very treatable.
Q: What is my child allergic to?
A: It’s often hard to know for sure. Our allergists have different ways of determining which foods your child is likely to be allergic to, and we can remove them from your child’s diet and see if his symptoms improve.
Q: Are there any foods that kids with EE tend to be allergic to?
A. Foods that seem to be most likely to trigger EE include:
- milk (and all dairy)
It’s important to read labels carefully, since some of these foods can be hard to avoid, especially milk and soy. Companies are required by law to use certain words when they list some foods (including milk, egg, wheat, soy, peanuts, nuts and shellfish) on the label. Your child’s dietician will explain everything you need to know about reading labels.
Q: How soon will we know what my child is allergic to?
A: We can think of determining food allergies as something that happens in two parts:
1. The first part is a matter of scheduling appointments. If your child is being seen at our EGID clinic, he’ll see his allergist and his gastroenterologist on the same day. The results of the skin and blood allergy tests are available that day, and patch testing (another type of allergy testing) is a three-day process, with results available on the third day.
These tests give us an idea of what your child might be allergic to, but the only way to know for sure is to test it. We do this by removing these foods from his diet.
2. If our predictions about your child’s food allergies are right, it takes about six to eight weeks for the inflammation in his esophagus to go away – even if his symptoms start to improve within a week or two. So after six to eight weeks, we’ll do another endoscopy to look for inflammation and see if his level of eosinophils has decreased.
Q: My child seems to have severe EE. Does that mean he’s probably allergic to more things?
A: Not at all. People with EE may have very severe or very mild cases, and this has nothing to do with how many or which foods they’re allergic to.
Q: Could environmental allergies be causing my child’s symptoms?
A: Yes, this is possible – your child’s allergist will test for these, too.
Q: Will my child have an allergic reaction if he eats meat that comes from an animal who ate something he’s allergic to?
A: Most likely not – if the animal has already processed the protein, it should be fine for your child.
Q: Should my child’s sibling avoid the same foods?
A: No, there’s no reason for the sibling to avoid the same foods. Since there’s a hereditary aspect to EE – if your child has it, there’s a one in ten chance another family member will as well – we may test the parents, too. But what gets inherited is the tendency to have allergies, not allergies to specific things.
Q: Will my child need to be hospitalized?
A: Occasionally, a child’s symptoms might be so severe that he needs to spend some time in the hospital, so that we can correct malnutrition and stop diarrhea and the loss of blood and fluids. We might treat him with a special diet, medications, or, in some cases, surgery. But please be assured that as a valued member of your child’s health care team, if this happens, you’ll be kept fully updated at all times.
Q: Should I tell my child’s school about the diagnosis?
A: Definitely. His teachers and school nurse can encourage him to follow his diet at school and provide alternative snacks or treats when appropriate.
Questions to ask your doctor
After your child is diagnosed with eosinophilic esophagitis, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise– that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. If your child is old enough, you may want to suggest that he write down what he wants to ask his health care provider, too.
Some of the questions you may want to ask include:
- Could something else be causing my child’s symptoms?
- What’s the best treatment for my child right now?
- When should my child see resultsin other words, when will we know whether treatment is working?
- Which foods might we re-introduce into my child’s diet? When?
- What are the side effects of the medication?
- Are any symptoms considered an emergency? What should we do if it happens?
- How much experience does this institution have in treating children with EE?
- How often should my child be monitored for changes in condition?
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