Our family lives with food allergies every single day of the year. ‘A’ has been allergic to a number of foods since she was born. Some of her allergies are life threatening, some are not. A few of the less-severe allergies presented as she entered toddlerhood and began to eat a wider variety of foods, then subsided a few years later. For a while she was allergic to corn, peas, chickpeas and sesame. She would get a repetitive cough when she ate them.
Other food allergies have been with her since she was born, and they have hung around since. She’s been allergic to milk since day one, literally. I hesitate to go back to the memory of her first reaction because in hindsight, those days were so confusing and painful. When ‘A’ was born the pediatrician told me her blood type was different than mine and as a result, her bilirubin count was high and she needed to spend time under the bililights in the hospital nursery. While she was in the nursery, the nurses gave her formula to drink. Although I am a “breast is best” advocate, I was okay with a bottle of formula at the time, and truth be told I would still be okay with giving a baby with high bilirubin a bottle of formula today. The more they poop, the faster they recover, and formula certainly makes a baby “go”. The problem in ‘A’s case was that the formula was straight-up milk formula and she was allergic to it. Who would have known? It didn’t register on my radar, because I had barely heard about food allergies. This was in 2005, when food allergies were just beginning to be seen in high numbers of children across the country. It wasn’t talked about back then the way it is now. When the nurses gave ‘A’ the formula and wheeled her back into my room, she had hives all over her body. I didn’t know what the hives were. I wasn’t accustomed to seeing newborns, and I figured it was a side-effect of the bililights. Wouldn’t the nurses know if something was wrong? Wouldn’t they say something to me?
‘A’s milk allergy started out severe and is still very severe. It is one of her life-threatening allergies. We know this not only because of blood and skin testing, but because she has eaten food containing milk and has needed epinephrine to recover. Tree nuts are another one of her life-threatening allergies, and they scare me so much more than dairy does. Reactions to dairy respond pretty well to the epi-pen; on the other hand, tree nuts are a whole other ball of wax. They take on a life of their own, and if a reaction occurs you use the epi-pen, keep your second one at the ready, administer albuterol and oxygen and steroids, and you pray. All of this while you are on the way to the hospital.
Two of her allergies which are the most misunderstood in our house are eggs and peanuts. Both are severe enough that we don’t serve her scrambled eggs or a peanut butter sandwich with meals. Unlike dairy and tree nuts though, I haven’t always been able to predict her reaction to eggs and peanuts. She first ate eggs in a baby biscuit when she was 9 months old and got hives around her mouth. For many years after, she tested as highly allergic to eggs, so we avoided serving them to her altogether. She has tested allergic to peanut. At this point I can’t even remember if she has eaten any peanut in her life. I don’t think she has. I would have to look back through her medical file to see, and it is a big, fat file. All I know is that she tested positive for peanut and all the doctors told me to stay away from it, so I did.
Life with food allergies stinks, I’ll tell you that. It stunk when she was 1 because I was so confused about what to feed her and I wondered about the nutrition profile of her diet. It stunk when she was 2 because she played with kids who ran around with cheesy fingers and I worried she would have a reaction because of cross-contamination. It stunk when she was 4 because the classes and parties and play times were all so food-based. Everyone had snack time everywhere we went. Snack time meant cheese or goldfish or healthy milk-egg muffins. And cheesy pizza. Life with food allergies stunk when she was 6 because by then I was sick and tired of cooking 1,095 meals and 730 snacks for her every year, plus separate dairy and egg-filled meals for the rest of the family. Day in and day out. By the time 7 rolled around, I was done. I was ready to move on to better doctors who knew more about the future of food allergies and could help us.
We started going to Children’s Hospital in Boston to see what was happening with the research. The information we received there was helpful and took us to a good place. Her doctor recommended a baked egg challenge, where she would eat a muffin with egg as one of the ingredients. She passed that challenge and began eating muffins, cakes and breads with egg. Can I tell you how wonderful it was to finally bake cakes that contained eggs? Cakes like to be held together with a binding ingredient while also baking up light and fluffy. Eggs are the perfect solution. I was overjoyed. It was like we had hit the jackpot. After a year she was able to eat cupcakes, which are baked for a shorter amount of time (18 minutes to be exact). Then I fed her a cookie, baked 11 minutes, and the next day her stomach hurt. Shortly after, we saw her doctor in Boston and he urged me to press on and work through it, so I did. She quickly progressed from cookies to pancakes and waffles, both cooked for just a few minutes. We went back to her doctor. What now? I asked. French toast? He said no. He didn’t think she was ready.
Amid all of this, I cooked a batch of muffins at home that contained milk. I had seen what baked egg therapy did for ‘A’, and I knew a baked dairy therapy was on her horizon. It was the standard muffin recipe from the Joy of Cooking: 2 cups of flour, 1 cup of milk, 1/2 cup of oil, and some other ingredients. I made 12 muffins, and ‘A’ ate 2 of them. She was okay until an hour after she ate them. At that point the hives and “intestinal distress” came on. No epinephrine was needed, and she was fine in the end, but it was a sign for me that she wasn’t ready for baked milk (you think?). At the same time, it was a sign that she might be able to tolerate a lower level of baked milk. She didn’t go into anaphylaxis. That is positive.
In addition to seeing the allergist in Boston, ‘A’ sees a local allergist for asthma and seasonal allergy issues. Her local allergist listened to me describe the muffin incident, and heard my plea for a low-dose baked dairy therapy. He couldn’t help me, but said (snarkily perhaps?) that I should take her to Mount Sinai in New York because they are better equipped to deal with “people like me.” So off we went.
Her doctor at Mount Sinai immediately addressed the allergy of least concern, the egg. She believes ‘A’ has outgrown her egg allergy and is doing a scrambled egg challenge with ‘A’ this week. I also believe ‘A’ has outgrown the allergy and I’m happy to challenge her and cross it off the list. Next she addressed the peanut allergy by doing an advanced blood test that will determine just how allergic to peanuts ‘A’ really is. The results are pending. Finally she suggested doing a dairy challenge using a baby formula made of hydrolyzed whey protein. The idea is if ‘A’ can drink the formula without reacting, she can use it in a daily therapy and will most likely outgrow her dairy allergy faster. I purchased the formula and sampled it, and it is downright disgusting. So we will see what happens in this department.
I want ‘A’ to outgrow her allergies so that she can eat whatever she wants without fear. I want her to be able to eat anything without the risk of reacting or dying. I want to be able to cook a meal without keeping every cooking utensil separate, without washing my hands twenty five times, without remembering to put the non-allergenic foods on the top shelf in the oven so that the dairy food won’t drip and spill into ‘A’s dinner. I want to be able to go out to eat as a family and order off the menu. I want to be able to travel with my children. This spring my girls are learning French, and tonight ‘A’ said she wants to study abroad in another country when she is in college. Inside I cried, but on the outside I smiled and encouraged her. How is she going to live in another country with these food allergies? As a college student, no less?
I do believe she will outgrow her dairy allergy. I do believe there will be a desensitization therapy for tree nuts by the time she goes to college. I believe in science and research, and I see a bright future for ‘A’ and the other children who have food allergies. When I look back at the past I wonder why so many kids have them now. It is not the hygiene hypothesis, at least in our case. ‘A’ was born with her dairy allergy, she didn’t acquire it as she got older. It is something Jeff and I gave to her. Why? What happened in the past 40 years that changed the DNA of today’s parent? So much could be to blame – processed foods, pollution and more. I would love to know the answer. It is time to stop food allergies from forming, instead of treating them when they have already developed.
** Thursday is the scrambled egg challenge. We are excited! ‘A’ is nervous, as is expected. I am confident she’ll pass.