Hope For Children Suffering From Eosinophilic Esophagitis – Tips and advice for parents of a child suffering from Eosinophilic Esophagitis (EE).
I’ve written a few posts of our battle with my daughter’s Eosinophilic Esophagitis (EE). EE is a disease that is an allergic reaction in the esophagus, the tube that carries food from the mouth to the stomach. Eosinophilic Esophagitis is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell. The most common symptoms of EE in children are abdominal pain, nausea, vomiting, coughing, and failure to thrive. Basically, EE equates to having severe (or numerous) food allergies.
My daughter was diagnosed when she was five, literally after five years of battling conditions that were unknowingly symptoms of Eosinophilic Esophagitis (EE). We started to notice something was up when she was only three months old and began with vomiting, digestive issues, and weight loss as an infant. She literally couldn’t eat ANYTHING without suffering.
The foods that trigger EE (Eosinophilic Esophagitis) vary from person to person. One of the worst parts about food allergies, EE or severe food allergies is the learning curve that goes into diagnosing them. With my daughter, the allergy tests were never accurate so we were left with food diaries, elimination diets, and checking and tracking symptoms.
Eosinophilic Esophagitis seemed to never end. All the while, my daughter was in constant pain and we didn’t have any answers. She couldn’t eat what her friends were eating, and we could never go out to eat. Everything had to be homemade and highly monitored.
My daughter is now 11, and we’ve come a long way with EE (Eosinophilic Esophagitis). We followed the gastro doctor’s orders to keep my daughter on a strict elimination diet. If a food was intolerable, we kept it out of her diet for a long period of time (2+ years) so her espophagus could heal. And, we did our best to not give her the same food repeatedly, since it was explained to us that we could be introducing more problematic foods if we repeated too often.
How bad was my daughter’s EE? Well, we were at a point for nearly a year and half where the only thing she could eat besides some fruits and vegetables were the non marshmallow pieces out of Lucky Charms cereal. I kid you not. She was allergic to more than 40 foods and ingredients. Literally every type of grain, all dairy, all nuts, even most fruit and vegetables. There was a time where everything we tried resulted in a new setback. Her stomach was perpetually upset and straying from her miniscule diet of Lucky Charms and carrots would result in pain and nausea. Family vacations were canceled unless we could bring our food and it was extremely difficult socially for my daughter to be so restricted with EE. Every school activity and slumber party brought a host of questions and several “Lindsey can’t eat this, this and this” warnings. Sure, everyone was understanding about her Eosinophilic Esophagitis, but we still felt guilty about all the excess work it created for everyone involved.
So, we varied and avoided the best we could, and now… we’re down to three foods she can’t have! We still need to avoid additives and preservatives, but the introduction of the formerly problematic foods has opened up some doors and given us some freedom! My daughter experiences much less discomfort, vomiting, diarrhea, etc. And, best of all, she is able to eat some of the foods she has previously only been able to watch others eat. I was so happy when she had her first piece of pizza, I literally cried.
So, trust me when I say there is hope that the Eosinophilic cells will clear and the food allergy symptoms will lessen over time. Evidence has shown that diets that eliminate the allergy-inducing food can result in reversal of the esophagitis and disappearance of the eosinophils (Source: www.medicinenet.com).
Working closely with a good pediatric gastro doctor and a children’s allergist helped us out as well. It was tough to find support at first, but finally, the doctors we ended up with were on our side and supported us. There were others we kicked to the curb until we found the right ones to manage her Eosinophilic Esophagitis slowly.
I had to also stand my ground. I had to block out the talk from others that judged me. EE was rather new when my daughter was diagnosed and I had to hear a lot of unnecessary and erroneous input from people who nearly thought I was crazy for enforcing the diet with my daughter. I still have to deal with people who aren’t familiar with EE and try to tell me how to handle my daughter’s food allergies. When in reality, having food allergies with EE is a whole new ball game, and that’s something they would never understand. So, I ignore the unsolicited “advice” and go on doing what is working and helping my daughter.
We’re already at a point where we can look back on all this and see how far we’ve come and very gratefully so. I hope and pray for the same for anyone who is going through this. Eosinophilic Esophagitis is a tough journey, but there is light at the end of the tunnel if you can stay the course. My daughter is living proof. Please feel free to e-mail me at firstname.lastname@example.org or contact me through this website if you have any questions about Eosinophilic Esophagitis or EE in general.
See related posts below for more about EE – Eosinophilic Esophagitis.