National Eosinophilic Awareness Week

Try to imagine your diet without dairy products. Then take out all the foods that contain soy. Now remove anything that contains corn or eggs. Last but not least, don’t eat anything that contains chocolate. Not much left, is there?

My youngest daughter, who is eight, has Eosinophilic Esophagitis. EE is an allergic inflammatory reaction of the esophagus. I generally describe it to people as being a combination of food allergies and reflux. When the Youngest eats certain foods, such as anything that contains dairy, soy, corn, eggs, or chocolate, they cause her to have pain in her throat and stomach. Many times the reaction is so bad that she lays on the ground, curled up in a ball, moaning in pain. This isn’t an isolated event.  It’s part of her daily routine.  With a limited diet and pain medication, we’ve been able to make her life fairly normal. Maybe not every person’s kind of normal, but one that works for her and for us.

We’ve been fairly lucky so far. We have access to excellent doctors. We live in an area where foods both typical and exotic are easy to find. We like to cook – my Bestest claims he can make crepes out of air, water, and duct tape. I am a stay-at-home mom and have time not only to cook and shop at several stores (you never can find everything you need at just one), but to stay at home with her when she’s feeling badly and to take her to the numerous doctors appointments needed to treat her EE. We have good health insurance that covers much of the cost of her treatment. We also have a good enough income to be able to afford the food that she needs and can safely eat. A pain-free diet costs more.

Like many medical conditions, EE causes a lifestyle change. Making dinner, or any other meal for that matter, takes a lot of effort and planning. I can’t just follow a meal plan in a magazine or casually pick something up from the store. Labels must be read and recipes often need to be tweaked or disregarded entirely. Going out for a meal? Good luck with that. When the Youngest is in dietary lock down (her strictest phase), there’s very little she can eat. At one point, we tried going to lunch at McDonald’s. The only things she could safely eat were a hamburger (no bun, ketchup, pickle, etc.), apples (no dip), and either water or apple juice. Most of the menu was off-limits to her. We were able to go there with some confidence because we could look at the food’s ingredients ahead of time and determine what was safe for her to eat. We don’t have that luxury in most restaurants.

Again, we are fairly lucky. Through a process of trial and error, we’ve determined that she can occasionally cheat on her diet and still have a clean endoscopy. That allows us to let her have treats – a meal out, her classmate’s birthday cupcake, that special dish she’s been craving – but not too often, and not too much, or her endoscopy comes back showing eosinophils in her esophagus, which means there is damage occurring to her insides, meaning that she’s sick – something that no parent ever wants their child to be.

Too many children with EE suffer much more than she does. Some can’t eat food at all. They have to receive their nutrition through feeding tubes. Others have an extremely limited diet. If you see a child who will only eat chicken and rice, perhaps there’s a reason for that. At one point, the Youngest was also avoiding food containing wheat and potatoes, as well as watermelon (which she detests anyway). She had eliminated EIGHT foods, along with anything that contained them, from her diet. There wasn’t much left in her diet, and yet there was so much more that other kids who have EE can eat.

For these and many more reasons, May 16-22 is National Eosinophilic Awareness Week. The American Partnership for Eosinophilic Disorders (APFED) is trying to raise awareness of EE and other related conditions. I wholeheartedly support their efforts except for promoting the DumDums. We’ve also been doing Feingold for years. Food dyes are evil. If you don’t believe me, give the Eldest or the Youngest something containing food dyes. Insta-Bitch.

If I had to choose one of my children to have this condition, it would be the Youngest. She’s tough, strong, spirited, and resilient. She’s so far been able to shake off any lingering angst that this condition could instill in her. Blood draws? Easy. Having her back covered with little bits of food for patch testing? Fun! Endoscopies are another opportunity to earn a Webkinz or other treat. Doctors appointments give her the chance to commune with the delightful Miss Denise and the rest of the team. She really does always look on the bright side of life. With some research and effective treatment, hopefully more people with Eosinophilic Disorders will have the same opportunity.

Patch Testing
Endoscopy prep - Taking Matters into Her own hands
Everyone's Ready!
Post-Endoscopy Nap
The Face of Eosinophilic Esophagitis - Isn't she cute?

Life is about 10% how you make it, and 90% how you take it. She takes it exceptionally well. <3