This is National Eosinophilic Awareness Week. May 19-23.
What in the world is eo-sin-o-what? I asked the same question over two years ago when the doctors at Children's Mercy Hospital in Kansas City, Missouri put a name to the mystery of why my youngest child was throwing up colors of the rainbow. This rare, chronic illness has made food top-of-mind for the past few years.
Eosinophilic Gastrointenstinal Disorders plagues many children in America and is directly related to food allergies. My daughter, born into a family with asthma and allergies, got a full dose of the allergic condition. She had eczema as a new born, wheezed when I unknowingly ate something with nuts (she was nursed) and essentially became a human geyser when I introduced her to milk.
The mystery of this disorder is the reason APFED (American Partnership for Eosinophilic Disorders, http://www.apfed.org) went to congress and lobbied for more research and recognition. This disorder can completely alter the lives of the patient and families as food isn't as simple as "what's for dinner." Living with EG has many complications for the families ranging from finding medicines to quiet down the histamines to ending up on formula or feeding tubes by late adolescence or teen years. The resulting side-affects and strain on the family is why a few mothers started APFED about six years ago and have worked tirelessly to raise funds, awareness, and to get schools on boards with helping the kids live healthy, normal lives.
APFED has worked to empower parents and students to be able to carry their EpiPens, inhalers, formulas and other necessary medicines instead of keeping them in the nurses office. It meant empathetic teachers and administrators aware of the need for the kids to feel as normal as possible and use it as a teaching moment when the feeding tubes have been placed. It meant getting the word out on this complex illness.
EGID is more than just a peanut or shellfish allergy and hence needed its own recognition. The Food Allergy and Anaphylaxis Network site (http://www.afaan.org) has been helpful to EGID patients in listing alternatives for many allergic foods. The main difference is that EGID kids usually have trouble with a large number of foods, like my daughter, and often have to go on elimination diets or formula for longer periods of time. A lot of EGID (in all the various forms) becomes kids who can't eat.
Food allergic kids (peanuts, treenuts, shellfish) can simply stay away from the offending food, carry their EpiPen, and essentially maintain healthy lifestyles. The kids and teens with EGID tend toward the malnourished side (often one of the presenting side affects in infants - the mysterious diagnosis of "failure to thrive."). The road these kids travel often leads them to become "kids who can't eat." The inability to simply be a teenager and go out for pizza makes life complicated for kids in a food-oriented society.
My life as a mother of a little girl with EGID has changed dramatically. Her initial diagnosis was EG (meaning the offending eosinophils were in her stomach and small intestine). We went through a battery of different medicines and stints in the hospital she was semi-stable. She was 18 months old when we got the notice of the foods she was allergic to. We set out to make her life better. She still kept throwing up a lot and her bout with eosinophilic disease ended up in her esophagus. Thankfully, a few rounds of steroids and that cleared up in about a year. In the meantime, I've learned to read the labels of everything and to be her voice when she was too young to speak for herself.
The journey has been spiritual, mental, physical, and financial. It has been a learning experience for my family. My husband has had to balance his practicality (just shop at Wal*Mart) with his concern for his daughter (ok, get whatever she needs). I set out to discover what was available without the offending soy-eggs-milk-wheat-treenuts-peanuts-shellfish-fish-strawberries-oranges-bananas that are her top allergens. I found Whole Foods Market, local farmer's markets, and Trader Joe's. We moved across the state and in the St. Louis area stores like Diergerg's and Schnuck's have large organic food sections. I've discovered brands that are allergen free and have divorced a lot of processed foods. My daughter is four, her last scope was clean, and she has become a voice for her own health.
I have become become a pretty good chef. She has learned to celebrate the things she can have, such as enjoying fruit sorbets or slushies instead of ice cream, jasmine rice instead of pasta, and grilled chicken instead of chicken fingers. She loves lima beans, broccoli, apples, grapes, and carrots - how many four year olds do you know who will eat a plate full of lima beans? We cook together and continuously hunt for ways to enrich her life and take the focus off just food. There are moments she melts down, "I hate my stomach condition," she may utter in the face of ice cream or pizza, but she recovers with lots of love, a hug, and a trip to her special stash of foods such as Enjoy Life Cookies or an Edy's All-Fruit Lemon Bar.
Throughout the years, we have come to be thankful for my husband's career that enables me to still be at home (five years now). We thank God we are fortunate to have insurance that pays for her medicines and that so far, she doesn't need the costly formula. Our new city has a wonderful specialist in the field and she is my partner in keeping our daughter healthy. I found Lauren's Hope (http://www.laurenshope.com) and ordered a special medic-alert bracket. There isn't one for EGID, but their engraving allowed me to list her disorder as well as all the foods he is allergic to. I found APFED recently and was thankful to know there is a national push for this disease. The focus to hope, heal, and cure EGID is their mission...it is my mission.
My daughter has had multiple surgeries (the first to repair intestinal malrotation that was the first real sign she was sick and subsequent scopes to do biopsies of her GI tract). She practically lived in Children's Hospital for a while when she was a toddler. You wouldn't know it to look at her today. She doesn't cry as much now when she has to go for her quarterly biopsies and makes me proud of her strength. She is my Warrior Princess for a reason.
It is National Eosinophilic Awareness Week. What does this mean to the average person? As a parent, it means to be more observant of the ingredients you send to school for parties. It means considering an alternative to the ice cream and cake parties. It means giving out gummy bears instead of chocolate candy bars if you celebrate Halloween. It means non-food birthday parties that emphasize activities instead of food. It means not turning up your nose at a mother and child racing toward the bathroom in the restaurant because there was an offending hidden ingredient in her dinner. It means going to a fundraising garage sale if one is in your area. It means being empathetic to kids who are "different." It means simply caring.
I'm not sure what the future holds for my daughter or the other kids who live with this disease every day. I am sure of her infectious smile. I am sure of her imaginative play. I am sure of her love for her big sister. I am sure of her fondness for Dora. I am sure of her strength. I am sure God has her in His hands. I am sure because I have to be.