Wednesday, October 3, 2012

The beginning of our food allergy journey

Food allergies affect approximately 15 million Americans. The most common allergens are milk, eggs, tree nuts, peanuts, shellfish, wheat, soy, and fish. Many people outgrow certain food allergies. Sadly, the foods that cause the most severe reactions (peanuts, shellfish, and tree nuts) are less often outgrown. Reactions can include vomiting, rashes, itching, swelling, anaphylaxis, and even death. What's even more frightening is that one person's reaction can change with each exposure. Someone may have hives and itching for years upon exposure and suddenly develop anaphylaxis. A diagnosis of food allergy is not something any parent wants for their child.

We are not strangers to food allergy here in the monkey household. Mama monkey has had a shellfish allergy for as long as I can remember. Big Monkey has a peanut allergy. To date Baby Monkey has no known food allergies, and Daddy Monkey can eat anything (except milk because he's lactose intolerant which is not an allergy).

We've known about Big Monkey's peanut allergy since he turned 1 year. At 11 months I fed him egg whites (he had eaten egg yolks before, but the whites are the allergen) and developed a rash around his mouth. At his 1 year well baby visit, his pediatrician recommended a RAST test. This is a blood test that checks for IgE antibodies (the antibodies responsible for the reactions to food) specific for certain foods. The number indicates how likely they are to be allergic, but does not tell you the type of reaction that would occur on exposure. We tested Big Monkey for several foods, although I have since learned that this method of testing without history can lead to a lot of false positives. In our case, Big Monkey was positive only for eggs and peanuts.

I must admit, at age 1, eliminating eggs was much harder than eliminating peanuts. Everything has egg in it. Bread is even often brushed with egg whites to form a nice crust when baked. I spent that next year focusing mostly on eggs, but of course also not allowing peanuts near my son.

We retested at age 2 to find out that Big Monkey could again eat eggs! Yay! I was a super happy mama that day. However, his IgE levels went up for peanuts. Despite trying to keep him peanut free, his allergy was not going away. At that point we hadn't had any reactions and had no idea how he would react to a peanut exposure. Our first known exposure (i.e. One that resulted in a noticeable reaction and not just random small hives on his body) occurred when Big Monkey was about 2 years 9 months old.

We went to a friend's house for a playdate. We had not planned on staying for lunch, but the kids (and mamas) were enjoying themselves, so we decided on sandwiches. We made ham and cheese sandwiches for the boys and gave them their food. Then my friend made her daughter a pb and jelly sandwich. She sat on the other end of the table from my son. My friend washed her hands and then got a cup for my son's drink. To be cautious, I washed the cup with soap and water before giving it to my son. About 5 minutes later, Big Monkey had hives all over his face and his lips were swollen. He kept scratching at his neck, but otherwise said he was fine. We are not sure if he picked up residue from the cup, the table, or somewhere else, but it was a wake up call to me on several levels. First, it showed me exactly how little peanut residue it takes for him to have a reaction. As far as I know, that was just a contact reaction. Had he actually ingested a peanut, he may have gone into anaphylactic shock. There is no such thing as being too careful. Second, it showed me how I'll prepared I was. I had no idea what I was supposed to do. I had an epi-pen, but in that moment I realized that I had no idea when to administer it. I had no benadryl on me. I had no idea what dose to give him anyway! There was so much I had to learn that day and so much more that I am still learning.

Big Monkey is now 3 years 9 months old. It has been exactly 1 year since that incident. I now know to give benadryl for hives and the epi pen at the first sign of wheezing/difficulty breathing. I carry a bottle of benadryl, a medicine dispenser, and 2 epi-pens everywhere I go with Big Monkey. Anyone who is left alone with him is trained to administer the epi-pen and has benadryl dosing instructions, and he is rarely left with anyone that is not daddy or the grandparents. We are a peanut free home. I now know that products that say "may contain peanuts" actually contain peanuts 2-8% of the time, which is not a risk I am willing to take. In fact, "manufactured on the same equipment" is no longer a risk I am willing to take. I have learned that peanuts are not always called "peanuts" in all products (i.e. Arachis oil is peanut oil) and there are hidden peanuts in so many things. Ant traps, miracle grow potting soil, and even bean bags contain peanuts or peanut shells. Shampoos, lotions, granola bars, cereals, chocolates... The list of labels I must read seems to grow by the day.

Today my goal is to protect my son and still allow him to experience as much of childhood as I safely can. We still have playdates, we still go to the zoo and Disneyland, and we still fly on airplanes, but I am the "OCD mom" everyone stares at as I wipe my child's hands every time he touches something and is constantly telling him to not touch his face/mouth etc... I wipe the grocery cart and use a cart cover (or better yet, I bring my own stroller and cart). I'm not crazy. We're just trying to survive and have hope that he won't have to live a life this paranoid forever. Maybe he'll still outgrow this. Maybe, just maybe, there's a way to desensitize his body to this allergen. This has become a real possibility, but I need to complete more research before posting on that one.

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