Wednesday, July 1, 2009: VERY IMPORTANT MESSAGE

I apologize that this post is long, but it is critically important for anyone who sees Michael regularly -- or even occasionally -- to be aware of what we have learned in the past two weeks.

A week and a half ago, Michael ate one or two pistachios at lunch and had a bad allergic reaction. His face swelled up so badly that his eyes swelled shut. Because this was the first time I had ever seen anything like this, I wasn't quite sure what was happening, and thankfully, our pediatrician had an appointment open right at the time I called. So Michael was treated with antihistamines and steroids and sent to an allergist. On Monday, he had an allergy test administered for eight different kinds of nuts. We found that he is HIGHLY ALLERGIC to tree nuts and, due to possible cross-contamination, peanuts. You can (sort of) see from the photo that, even three days after the incident, his eyes were still visibly puffy and he was still having secondary reactions to the pistachio oil.

Mike and I are still learning how to handle this situation, but the basic summary is that our lives are going to change dramatically. Because of the severity of his allergy, even tiny residue of nut oil or particles, too small to be seen, can trigger anaphylactic shock within minutes of exposure, resulting in constriction of his airway and dangerously low blood pressure, to the point of stopping his heart. We now have an Epi-Pen injector that we carry with us everywhere Michael goes, which is to keep him from going into shock while we wait for paramedics to arrive. We have had to eliminate all nut products from our house. This isn't just limited to products made directly from or including nuts, but also products that could have been processed in a factory where nuts are also processed, like chocolate chips, baked goods, ice cream, some breakfast cereals, and even lotions containing almond oil or shea butter. Even some potting soils and fillings for toys like hacky sacks can contain crushed peanut shells.

That's just at home, where we can make the environment reasonably safe. It's the rest of the world that makes this condition so terrifying. Michael could have a severe reaction if he merely touches something that a person who has nut oil on his or hands has touched previously, like a shopping cart handle. Right now, we can't even go to picnics or potlucks where food with nut products or possibly containing nut products is served, even if Michael doesn't eat any. Anyone who touches him having eaten those items is a risk. We have to avoid restaurants that cook with peanut oil or serve any items containing nuts -- which is almost everywhere; just try to think of one that doesn't! That means no more Chick-fil-A, Five Guys, or pretty much any Asian restaurant. Buying prepared food from the grocery store, like baked goods, is dangerous because we don't know where all the ingredients came from. The same is true for eating at another person's house. Every teacher, every coach, every babysitter, and every nursery supervisor that Michael ever has will have to be trained in how to administer the Epi-Pen in an emergency, and every school he goes to will have to make accommodations to lessen his chances of exposure. (For those of you familiar with the public schools: this means he will probably have a 504 plan.)

To those who have never encountered a person with a severe food allergy, these restrictions probably seem excessive and ridiculous. But seeing this terrible reaction happen to your own child changes your opinions immediately. I cannot emphasize enough how serious this is. The restrictions are in place because we JUST CAN'T KNOW what has come into contact with what, and the cost of a mistake is too high to risk. Unlike many childhood allergies (eggs, wheat, milk, etc.), tree nut allergies usually persist for life, so it is unlikely that Michael will ever grow out of it. Though we always believe in and hope for God's miraculous intervention, chances are that the best we will see is that his sensitivity will diminish with age.

Over time, we will learn a lot about ways to make it easier for Michael to be part of regular life. We'll get used to remembering what is and isn't safe, and as he grows, Michael will take more responsibility for managing his allergy. So I expect that we will not always have to be the Nut Nazis, and before long we will start being able to attend potlucks and go out to less-threatening restaurants. But right now this is all new to us, and Mike and I are terrified, stressed out in a way we have never been before, overwhelmed, and exhausted. Please don't take it personally if we are extra-sensitive to any possible exposure, less able to come visit right away, or unwilling to compromise or "just try" something. If you are around us, we may ask you to wash your hands frequently. It will take us a while to learn how to determine where the biggest risks are for Michael. At present, we are going to err on the side of caution in every instance. The last thing any of us wants is for a pleasant visit to end in the emergency room.

Thank you for your understanding. At the moment, this still seems like one of the scariest things we have ever faced head-on, the fact that our child could die from such a ubiquitous and seemingly innocent object. We value your patience and your prayers. Below I have put a few frequently asked questions to help.

How could this have developed? We have no idea. The allergist told us that the incidence of severe food allergies in children has skyrocketed in the past few years, so where there might have been one child with a severe allergy in a school when we were kids, now there could easily be a dozen or more. According to the doctor, nothing Mike and I could have done would have changed the likelihood that a child would or would not have this condition, and it often has no connection to genetics. The best theories currently propose that there's something in the American lifestyle that makes this more likely -- the chemicals in our environment? something common in our diets? living in hyper-sanitized environments? It's impossible to test these variables in any reliable way.

Why hasn't Michael had any reactions before now, since he obviously hadn't been under these precautions? Allergies -- as opposed to food intolerances, which are where one's body just can't digest a certain food (like milk, with lactose intolerance) -- are overreactions of the immune system, which thinks that a harmless stimulus is a dangerous pathogen and attacks it accordingly. It takes more than one initial exposure for the body to build up to the dangerous reaction. Each following exposure usually results in a more severe reaction than the one before it. Though we hadn't fed Michael any nuts up until now, we hadn't carefully limited his exposure to them, and he has probably come into contact with nuts more than once, and on June 22 (our anniversary, on top of it all), his body had just reached its critical response.

What counts as a tree nut? Almond, Brazil nut, cashew, chestnut, filbert/hazelnut, macadamia nut, pecan, pine nut (pignolia nut), pistachio, walnut, beechnut, ginkgo, shea nut, butternut (not the squash), hickory, chinquapin, lychee nut, coconut (though this one is usually not allergenic), and pili nut. Peanuts, though they are legumes, are included on the list of allergens because there is a significant chance that someone with a tree-nut allergy is also allergic to them, and because the amount of cross-contamination in the manufacturing process is so high.

Where can I learn more? For a good, short summary, try the Mott Children's Hospital at the University of Michigan and the Food Allergy Initiative. The Food Allergy and Anaphylaxis Network has lots of resources and tips, too.

How's that other kid you're having? At my last pre-natal appointment, everything seemed fine. I haven't gained much weight (due in part to nausea, stress, and aforementioned sudden changes in our diet), so the doctor told me to make sure I eat lots. The allergist also assured me that we can't affect the baby's chances of ending up with allergies like Michael's, so I shouldn't worry.

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