My toddler was diagnosed with a rare allergic disorder called Eosinophilic Gastroenteritis last May. This past Friday, our little support group got enough members of the House of Representatives to get a House Resolution passed to make a National Eosinophil Awareness week, which will occur every year on the third week of May. To celebrate, I’ve posted on our family blog little things I’ve learned over the past year to cope with A’s disease. Here’s the first post of National Eosinophil Awareness Week:
I had a nice Mother’s Day this year. I got earrings from the little boys and a microplane from Nate. But, the best present I got was the news that the support group for A’s disease had gotten enough congresspersons to pass a National Eosinophil Awareness Week.
Most of us know how histamines are related to allergies and how miserable they can make life. But, a few years ago, doctors learned that histamines can trigger the production of eosinophils in some types of allergic reactions. Eosinophils are white blood cells in the immune system.
Oftentimes, people with food allergies eat something they are allergic to and histamines are triggered, creating symptoms like itchy throat, rashes, or an analphalytic reaction, to name a few. Less commonly, the reaction continues, and eosinophils come to the scene of the reaction. They create other symptoms that a histamine allergic reaction can also show like vomiting, diarrhea, and difficulty swallowing. This is what happens to A and lots of other people. (Click here if you want a really good explanation of eosinophils and Eosinophilic diseases.)
A was diagnosed with Eosinophilic Gastroenteritis last May (almost a year ago today in fact). It was a hard diagnosis because many patients with EG cannot eat any food. Can you imagine not eating? Worse yet, can you imagine not being able to feed your kids? For a while, we weren’t sure if this is what would happen to A.
But, A is lucky. He has a mild form of Eosinophilic Gastroenteritis. He is only allergic to dairy, soy, eggs, tree nuts, peanuts, shellfish, and fish. Lots of these kids are allergic to ALL food. These kids throw up when they try to eat anything. They have feeding tubes. They can’t gain weight, and they’re smaller than they should be.
I’m lucky, too. We have a great support group, AZ-APFED, and our online support group have been great resources. I meet amazing moms in these groups: moms who fight insurance companies, moms who create recipes out of the two or three “safe” foods their kids can eat, moms who stop eating the foods their kids are allergic to so that their kids can continue to be breastfed.
Eosinophilic Gastroenteritis is still a “new” disease, so these support groups are important for getting people together to figure out how to spread awareness in the medical community, how to get insurance companies to cover amino-acid formulas and supplies, or how to entertain your child who can’t eat while everyone else sits down to Thanksgiving dinner.
No one knows this disease’s long-term impact, why so many more people are showing these symptoms, or how likely remission is for those who have it, which is why getting this National Eosinophil Awareness week is an important first step for our little group.
In honor of this week, I’m going to post something every day that I’ve learned as a mom dealing with this disease.