My daughter is 10 years old and she is allergic to food. What kind of food? Well, pretty much nearly all food. She currently can eat grapes, melon, and cherries. However, she does have a new rash and the cherries are suspect.
Bailey has a disorder called Eosinophilic Gastroenteritis or EGE, for short. When Bailey eats food, her body sees the protein in food as an allergen and it produces white blood cells called eosinophils. The eosinophils are building up in her stomach and intestine and are causing damage. The cilia in her intestines were no longer fingerlike, instead they were blunt and that prevented her from being able to absorb nutrients. EGE can only be diagnosed by doing an endoscopy.
But Bailey was not always sick. Up until first grade she was a normal, healthy little girl. She could eat anything she wanted. Then suddenly she began complaining of stomach aches. After a few months she began vomiting every time she ate. We took her to a doctor and he sent us to an allergist. The allergist tested her and said she was allergic to corn, all meat and poultry, dairy, nickel, and cobalt. Nickel is in nearly all plant food and in seafood. Feeding became very difficult. We did our best to eliminate what she was allergic to but it was extremely hard. And for awhile she did okay. Then earlier this year she became really sick again. She missed a full month of school just before spring break. So, the doctor sent her to a gastroenterologist and the diagnoses was made.
At first we tried an elimination diet and Bailey started taking Budesonide. Budesonide is more commonly used in a nebulizer for asthma. But instead of inhaling it, we had to mix it with sugar and ingest it. (Usually they suggest mixing it with Splenda but Bailey is allergic to Splenda. It has corn in it.) Unfortunately, it wasn't enough. So, then we dropped even more food and started on a special formula.
Bailey was allergic to the first few formula's we tried. We finally settled on a formula called Neocate. Neocate is made up of amino acids so Bailey takes the formula and then her body builds its own protein. It has all the vitamins and minerals her body needs. However, the formula does not taste well and Bailey could not drink enough. By this time she was only eating a cup of rice a day, grapes, watermelon, potatoes, strawberries, and homemade bread made of flour, sugar, water, and oil. Unfortunately she was still having an allergic reaction to food. She took benadryl daily due to rashes and intense itching.
So, the next step was to remove all food. We went back to the hospital and the inserted an ng tube. An ng tube is a feeding tube that is inserted into her nose, down her throat, ending at her tummy. Inserting the tube was extremely traumatic. However, two days after the tube was placed and food was removed from her diet, Bailey came and told me she was glad she had the tube. It was the first time she had felt full.
You need to understand that during this time, Bailey dropped from 68.5 lbs. down to 59. She had less than 7% body fat. Things were not going well. After two weeks with no food, Bailey's rashes cleared up, the itching stopped, she began growing taller and gaining weight, and her stomachaches and headaches stopped. But the best of all was that her whining stopped. This child whined a ton and suddenly it just stopped. She was a totally different child. We even discovered a sprinkling of freckles that we never knew were there because they were covered under red skin.
After a few weeks without food, we began food trials. We started with grapes, melon, and rice. (Staying under one cup of white rice a day because rice has nickel.) That seemed to okay so we added cherries and potatoes. She reacted to the potatoes. Next we tried beef. She reacted to the beef. Avocado came next without luck. Then egg. We thought we had a plan with egg. We made it a whole week and on the day we planned to add shrimp, she got sick from the egg. We were so bummed. Took a break to allow the egg allergy to clear and then started shrimp. Shrimp was one of her favorite foods previously. It only took two days for the reaction. At this point we had a follow up with the gastroenterologist and we made the decision to stop food trials. Bailey was losing weight again and it just wasn't worth it. So, for now we are back to cherries, grapes, and melons. Bailey was eating 2 lbs of cherries a day though and I think she is now starting to react to cherries. We are backing them out of her diet and we are trying to make sure she doesn't overdo the grapes or the melons. She needs something to eat.
She still has the ng tube but it is nearing 3 months with the tube down her nose and they don't normally last that long. We've been to emergency a couple times with a blocked tube but have been blessed to have the blockage cleared. She is scheduled for a g tube on August 3rd. (A g tube is a tube inserted through the abdomen into the stomach. G tubes are used for people who will need to be tube fed for a longer period of time.) We are worried about the ng tube holding up but Bailey has girl scout camp coming up and the g tube takes time to heal so we want to hold off until after camp.
I have to give kudos to Girl Scouts of America. They are wonderful about including special needs kids into their camp programs and making it possible for them to enjoy as much of a normal camp experience as possible.
As for Bailey, there is no cure for EGE. It is a chronic and debilitating life long condition. What it will mean for her future we do not know. For now the plan is to go three more months with no food and then begin food trials again. To learn more about this condition, please visit:
http://apfed.org/drupal/drupal/index.php
