I have a beautiful four-year-old daughter. She is bubbly, has a big dimpled smile, and battles food.
The other day I went to the grocery store in search of something that was soy-milk-egg-wheat-nut-treenut-fish-shellfish free. I went up one aisle and down another and read ingredient after ingredient. My heart began to palpitate and my head began to ache. The food aisle seemed as if they were all closing in on me and becoming a formidable opponent in my war to maintain a good quality of life for my youngest child.
Eosinophilic Gastroenteritis. The name at one time seemed longer than her. This rare disorder - deeply associated with food allergies and tends to run in pairs with its cousins of asthma and allergies - causes the eosinophils or white blood cells to act as if food is a parasite. My baby girl first became ill with violent throwing up episodes at 12 months when I was weaning her from breast milk and introducing more diary. "Perhaps she is lactose intolerant," was one thought. "Perhaps it is the additives," was another thought. "Surely organic milk is better."
I remember calling her doctors and being told "its just a cold." She was throwing up, had a runny nose and had already battled severe eczema since shortly after birth. It is sadly funny to me now that her then primary care physician didn't make a connection that food allergies and me nursing her would've caused the severe eczema episodes. We finally did an allergy test and learned the shellfish, she was three months old. That was no problem for me, her older sister was allergic to shellfish and fish. It was also no problem to eliminate nuts, also because of her older daughter. But milk? eggs? soy? diary? Those things are in just about everything and in some way were a part of my diet when I was her primary source of nutrition. It is the grace of God that it didn't kill her.
My beautiful chocolate drop was like a scene from the Exorcist when she threw up. It was not until she was 15 months old that her intestinal malrotation was discovered. Her rush to surgery and hospital stay ended up being close to three months as her throwing up continued and changed hue from clear to yellow to green. The GI docs at her children's hospital did barium swallows and scopes to discover her disorder. She was 18 months old.
The RAST blood allergy test revealed the food allergies. The main thing at that time was soy. We managed to know that cheese and processed meats would send her running to the bathroom like a quarterback in the end zone. There were times McDonald's fries would cause an eruption like Mt. Saint Helen or when pasta would come back up like molten lava. We learned to laugh in the midst of the frustration, exhaustion, and endless laundry.
It has been over two years now and she is on fairly good control medicines. There is no cure, some of the kids with EGID end up with feeding tubes and formula. Medicine only masks the symptoms and doesn't cure the disorder. We are trying to keep her from becoming malnourished as her list of food allergies is longer than the grocery list. She has finally accepted rice milk on her wheat-soy free cereal. She loves fresh vegetables and fruits. Bread is giving her fits and her love of croissants is hard for her to disavow.
Tomorrow she has another scope. Her reactions to foods lately are becoming more frequent. She has taken to eating rice, grapes, carrots, Cheerios. She is tough though and still runs, smiles, and plays. Yet, I can look in her eyes and see her weariness. She is up in the middle of the night gaging and spends parts of the day running to the bathroom. Her hair is starting to fall out, a side affect of the steroids and "having a major illness" according to her specialist. She shouts "I'm ok!" In my heart, I want to believe it, I want her to believe it. My baby girl and I will continue our quest for a good quality of life. We don't want to have food control her, yet, in ways it does because it can be life threatening.
My trip to the grocery store the other day ended with me picking up some jasmine rice, her favorite, and a basketful of grapes, pineapples, watermelon, and cucumbers. I did a last sigh at the cereal aisle, bid my farewells to the cookie aisle, skipped the bakery section, and waved good-bye to the ice cream. That day, we won the battle.