What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Sarah De La Cruz.
Today my one year old Jonathan and I spent part of the morning doing further testing for his nut allergies—this is the fourth round of testing in 4 months. This time I brought in actual samples of cashews, peanuts, walnuts, almonds, sesame seeds, and chick peas and they pricked his back with a needle that had first scraped the allergen. The good news is that he might not be allergic to sesame as previously thought (tested positive via blood test), and we’re going back to try a food eating challenge with sesame in a few weeks. The bad news is that his reaction to cashews, peanuts, and almonds were all fairly high. No nuts for now. Let me back up a little bit. Prior to Jonathan’s first diagnosis of food allergies (tree nuts, peanuts, sesame, wheat, soy, chickpeas, lentils, and eggs) I wasn’t the most understanding or sympathetic. I honestly had no clue what the deal with food allergies was. While I was still pregnant with Jonathan I was on a flight to visit my in laws in Puerto Rico. The flight attendants announced that a passenger with severe allergies was on our flight and asked if we would all refrain from eating nuts. I threw a tiny bit of a hissy fit to my husband, saying that I was pregnant and that if they didn’t have something else for me to eat I was going to eat my nut snack bar and they could deal with it. Classy, right? I had a similar reaction when I first heard about nut free classrooms. If kids are so sick and sensitive that they can’t be around nuts should they really be in school? I should be able to send PB&J and homemade treats for class parties. Hmmmph. Needless to say, I’ve done a complete 180. I’m embarrassed at how insensitive I was. I now know that kids with allergies are not weak or sickly at all. They are exactly like other kids, with one tiny difference. They need to be extremely careful about what they eat. As we get further along in our allergy road I want to share some tips and tricks that we are learning to help us be prepared when we are out and about. Today though, I want to share 5 things I’d like you to know about living with a child with food allergies. 1. Reading Labels: I am an expert label reader. The first thing I do when I pick up ANY food is scan the ingredients, look for the tell tale “MAY CONTAIN NUTS” label, and then read the list one more time. And maybe one more after that. Grocery shopping takes longer than it used to, but slowly but surely I’m finding brands that I know are safe. If I am visiting a friend or family and food is offered to us I will hunt down that package and read it before I share anything with Jonathan. 2. Fear and Safety: Right now, while we are getting our allergy bearings, we are living under a cloud of fear and worry. Some days are less gloomy than others, but it never goes away completely. I try to only give Jonathan new foods when Irving and I are both home in case he has a reaction. I worry that when I put him in the grocery cart, restaurant high chair, or swing at the park, that the child before him may have been eating a PB&J and left some peanut butter behind. I worry when I leave him with a babysitter or in the childcare center at our church. I worry because the stakes are high—my baby’s life is on the line. 3. Advice from Others: Upon hearing that Jonathan has allergies, it seems that everyone has a piece of advice to share. While I appreciate people’s good intentions, it can be overwhelming. It’s been suggested to me that I do the following to cure Jonathan’s food allergies: eat red meat, eat chicken, eat allergens every third day, and to remove all of the carpet in my house, and also that he’ll grow out of all of his 6+ allergies soon so not to worry. All given with good intentions, but if the cure was really so simple I’m sure my doctors (and we have a whole team of them) would have mentioned these by now. The best advice I’ve been given, other than from my doctors, comes from other moms with kids that have food allergies. We’re in this boat together and it is oddly comforting to know that there are other families going through the same challenges. 4. Allergies are real. They are not made up. Kids with allergies are not just picky eaters. Just this past weekend a man at the grocery store who saw me buying my nut samples for today’s allergy tests told me all about how it wasn’t possible for Jonathan to be allergic to nuts because he’s never actually eaten them before. That’s a nice sentiment, and I really wish it were true, but after seeing Jonathan’s face nearly explode from eating chickpeas, I’m not going to push it with nuts! 5. The Cause is Unknown. As much as it would be nice to pinpoint where allergies come from, doctors just don’t know yet. I have two beautiful, smart and strong boys—one has allergies and the other doesn’t. They have the exact same environment, DNA, have been fed the same foods, and yet Jonathan has severe allergies and David has none. They are researching, but definitive answers have not yet been found. Allergies are still a very new medical field. Unfortunately we don’t have all of the answers yet. Jonathan’s case is particularly challenging as his blood tests and skin tests aren’t really lining up with each other. We know he has food allergies, but we don’t have the answers we’d like yet. I am hopeful that in Jonathan's lifetime doctors will find a cause and a cure for food allergies! In the meantime we are working carefully with our team of doctors to learn what we can about allergies, and I am taking my role of Mama Bear seriously while I work to protect my sweet baby.