More doctors’ visits means more info. But more info doesn’t always equal more answers. Sometimes it means more questions and confusion. Sometimes it means solutions and some times it means a long windy road that is headed slowly, but surely to the right place.
After what seemed like forever (it was really just 6 weeks–but that IS forever when you’re waiting for information about your child) we had an appointment with her Gastroenterologist (GI).
The 6 weeks leading up to the appointment was a rollercoaster ride and I held my breath the whole time. Some days were great and she would eat things we weren’t used to her eating like a waffle. Then there were days where she would choke and throw up or she would spit food out instead of swallowing it. I took careful notes of everything that she put into her body and every symptom she had. I meticulously measured medicine and set timers so that we were executing our care plan to the letter. The idea was that she was supposed to just be getting better and better but it was very up and down. So by the night before the appointment I was so eager I could barely sleep (story of my life–any kind of excitement keeps me up all night).
After the doctor carefully listened to everything I had to say he determined that she had been on the steroids long enough and that it was time to address the foods in her diet. He determined that she needed to begin her elimination diet. He removed; milk, eggs, barley, corn, potato, and turkey from her diet. Because these ingredients are in the vast majority of foods (think corn syrup etc) he determined that she needed to start drinking Elecare Jr (a hypoallergenic medical food/formula) to help meet her nutritional needs. The idea is that we remove these triggers and then scope her again in 2 months. If the scope is clean we know that we weeded out the trigger. Next she will add one food back at a time until we determine which food it was causing the irritation. IF she doesn’t scope clean in 2 months than we remove more and it’s time to see an out of state specialist.
He was kind enough to have his dietician come in and give me heaps of information and a few recipes. I picked my jaw up off of the floor (from shock) gathered all of the samples for formula that I had been given and headed to the car. I had mixed feelings. I felt all along that it was important to talk about her diet, but I wasn’t ignorant to the fact that these new changes would make feeding her particularly difficult. I called my husband on the way home and let him know the uphill battle we would be facing. I wanted to get straight to work when I got home. I started a list of things that I needed to find a safe alternative for. I needed a safe yogurt, milk, fruit snack, granola bar, cereal, and bread. I headed out to the grocery store determined that I was going to meet this head on. After all I’m a notorious “jump in with both feet” kind of girl.
What I met head on was a brick wall. I was reduced to tears in the natural foods section of the grocery store and I realized that I could not feed my child, at least not easily. What was I going to do? She still had wheat BUT since she has to give up barley it can be difficult to find flour that hasn’t been”enriched” with wheat. The most surprising difficulty I ran into was corn and potato. Corn and potato starches are used often in vegan, gluten free and allergy friendly foods as a thickener. Which meant I couldn’t buy her vegan cheese or egg replacer. Every where I turned I seemed to be land locked by allergens or triggers. I gathered a few items that were safe and with much disappointment and after spending WAY TOO MUCH I made my way home.
The next few days were rough and filled with anxiety. I woke up with breakfast dread. Feelings of panic anytime any of the kids were hungry (which let’s face it– is every 37 seconds during the summer) guarding myself against a melt down that I felt sure would ensue the first time we had to tell her that she couldn’t have one of her few beloved foods. She is doing so well. It honestly seems to be effecting me more negatively than her. We’ve had a few moments of her being upset about not being able to have something or saying “But I like popcorn” but for the most part when we tell her a food will make her boo boos hurt she just says “ok”. The hardest night came when I was trying a new safe chicken tender (from scratch) made with safe ingredients. They didn’t turn out right. Now usually if I wreck dinner (which is surprisingly rare–considering I can wreck a lot of things) I would order a pizza or throw the kids in the car and go get Chick-fil-a but I dawned on me that I couldn’t do that. All I could do was get more groceries and try again, but at the time my husband had my van and his car isn’t big enough for all of the kids. It was a panic moment for me and that’s when I reached out to a mom who has been there and done that when it comes to EoE and I simply typed “I can’t feed my child” and she knew exactly what to say to help me and even offered to meet with me the next day.
Today has been a good day. I have taken it minute by minute snack by snack and meal by meal and gotten through it. I know soon I’ll look back and laugh at how dramatic and frazzled I am right now and all of this will become second nature, but right now it’s hard and that’s okay. It’s allowed to be hard and it’s allowed to suck and I’m allowed to be mad and sad and scared. All of that is okay. It’s all part of our story and we’re doing our best.
If you’re wondering what I’m doing with all of my eggs and milk check out this post…What Do You Do When You Can’t Use What You Harvest? Is it Time to Sell the Farm??