“Hi, Mrs. Stoner, we have your son’s labs back. He has eosinophilic esophagitis and will need to remove all dairy from his diet. We’re sending some paperwork in the mail and will see you in another three months for another endoscopy.” *click*
Starting at three months old, my son would heavily projectile vomit. I remember standing at the doctor’s office cradling a fussy baby while trying to describe his symptoms. I was run down, covered in the smell of vomit, and was carrying full-sized adult towels with me waiting for his next episode. I was told “babies spit up, that’s normal” by a condescending nurse; next thing I know he’s vomiting across the room. The nurse rushed the doctor in, who sent us for immediate GI imaging and our first non-answer — reflux. For the next three years, we pleaded our case to doctors and were sent for various tests just to be told it was constipation or reflux and that he’d surely outgrow it.
Going anywhere in public was an anxiety ridden nightmare. I’ve lost count of the number of times my son has thrown up in restaurants, only to be met with stares from other patrons for taking our clearly flu-ridden child out in public.
So finally, at three and a half years old, my son underwent his first endoscopy and colonoscopy. Ever have do the colon cleanse prep? Yeah, not fun for a child. But this finally led to our diagnosis, eosinophilic esophagitis, also known as EoE. We had a name. We knew what was making our son sick. But that was just the start of our journey.
The tricky thing with eosinophilic disorders is that, while you may have a name, treating the disease can take years of trial and error. In nine months, I’ve learned more about this disease than I thought was even possible, thanks in large part to a Facebook group of parents also battling the disease.
Eosinophilic esophagitis is an allergic reaction to certain foods that occurs in the esophagus. When a trigger food (or environmental allergen) is introduced, white blood cells called eosinophils accumulate in the esophagus, causing long term damage and symptoms such as choking, coughing, and vomiting. While there are some medicines that can help alleviate the symptoms, the only way to properly treat the disorder is through food elimination. Several parents have had their children on elimination diets due to food allergies, Crohn’s, celiac disease, and other disorders.
The rate of children diagnosed with eosinophilic esophagitis is rising. In 1995, only 5.3 out of 100,000 children were diagnosed; this had climbed to 19.2 children by 2015. And it’s not just EoE that’s on the rise; food allergies are on the rise as well. Maybe there’s more awareness of these disorders? Maybe it’s all the chemical crap we put in our food? That’s a debate for a different time.
Those parents of children with food restrictions, for whatever reason, are aware of the nightmare that comes with reading labels, searching for allergen info before trying a new restaurant, making sure that the epi-pen and other medications are readily available, and trying to navigate children’s parties both inside and outside of school. I have learned the hard way that even putting a little lotion on my son’s hands without checking the label can have painful results.
If you’re not a parent of a child with food allergies, there are things that you can do to help. First, know that not all allergies are the same and some children have multiple types; my son has both EoE and traditional IgE (Immunoglobulin E) allergies. Ask your child’s teacher if any children have allergies or food restrictions and provide safe, store-bought food with the ingredients listed clearly. Provide contact information on any parties and respond to parents request for a description of food that will be served; while I do not expect any parent to cater their own child’s party to my child, I do like being able to bring the same allergy-friendly foods for my son to participate. Understand that allergies and food restrictions are a very serious thing, and that a child may be able to eat a certain food one day and then need it removed the next. Finally, no parent owes anyone an explanation for their child’s allergies or restrictions.
No parent wants this journey for their child. I’ve had countless breakdowns in the aisles of Target and been treated like a Gwyneth Paltrow wannabe asking about safe snacks at the food kiosks at the zoo. Throughout everything my son has been extremely fortunate to have a strong support system in both family and friends that ensure he is both safe and involved, and I am forever grateful to have such wonderful people in our life. In the end, that’s what all kids should have.