This past week marks one year since Jonathan was first diagnosed with food allergies. I won’t bore you by rehashing all of the details that you can read HERE, so I’ll give you the quick cliff notes version. At just 9 months old, after several sudden hive outbreaks and ongoing eczema we tested Jonathan for allergies. He initially tested positive for allergies to wheat, soy, garbanzos, lentils, eggs, peanuts, tree nuts, and sesame. 8 different foods. Just reading that list makes my head spin. I also can’t get over how little he was when we started dealing with this!
After a month or so we were able to add wheat and soy back into his diet and he has been fine with both of them. In fact, “tof” (tofu) is one of his very favorite foods! In June we were able to do a food challenge with our allergist. He fed Jonathan increasing amounts of tahini (sesame paste) over the course of 4 hours and we watched for reactions. He was reaction-free after eating a full tablespoon of tahini and we were able to remove sesame off of his list as well!
With the help of a dermatologist, his skin has cleared up considerably (see pic above, and that was a good day)! He still gets flare ups and we have to be really diligent about his skin care routine with regular baths, hypoallergenic soaps and lotions, and a prescription cream that we use as needed. The weather affects his skin, especially the change in weather, and cold moisture (hello Seattle). On our recent trip to Mexico his skin was clearer than we’d ever seen it (warm moisture), so Irving is insistent that we move…it’s for the baby, right? Or is it for those margaritas?
He is also growing like a champ! People expect him to be small and malnourished with so many restrictions but he is actually off the chart for both height and weight, and growing like crazy! At just 21 months old he weighs 31 pounds and wears a size 3T. This kid won’t let something like a “little food allergy” hold him back!
And now we wait. Jonathan’s list of allergies holds steady at eggs, garbanzos, lentils, peanuts and tree nuts. Still a lot, but considerably less than when we started. We will retest him when he turns two in April and we are praying that we will be able to reduce this list yet again!
In the meantime, we have found a new normal and I want to share a few things that we’ve learned on this journey.
1. The first thing you need to know as a parent of a child newly diagnosed with food allergies is that it will get better/easier/less scary. Promise. I cried every day for the first month. I was so scared for my baby (and he really was just a baby when we started this!). I felt like I had to start over in the kitchen trying to find foods that were safe, never knowing when we’d stumble upon another allergen. Things have leveled out now, we have found our favorite “safe” brands to eat/buy (that’s a post for another day), and I’ve figured out which recipes to use, what substitutes work well, and which restaurants are safe for us to go to.
2. Clean out your pantry of any allergens. It will make your life so much easier knowing that your child can’t find a bag of nuts in the pantry. We don’t keep anything in our house that Jonathan is allergic to. David and I do “Mommy dates” where we will go get our peanut butter cup fix, but we tend to not bring them into the house.
3. Find your support group! When we first received Jonathan’s diagnosis I needed to talk about it to help wrap my mind around it and figure out how to do this. A few of my friends with kids who have allergies became my “allergy mentors.” They patiently listened and shared tips and ideas with me and it meant so much. Then I reached out via the internet and found other moms dealing with similar situations. It helped so much to know that I wasn’t alone, and I learned so much too.
4.Be vigilant/trust your gut. You would be amazed at the places you will find allergens lurking. I don’t say this to be alarmist, but to remind you to be watchful. This summer we spread out our picnic blanket under a tree, set Jonathan down, and then realized someone had dumped out a bag of trail mix full of nuts in the same spot we were sitting. I kid you not! We were surrounded by almonds and cashews, right within Jonathan’s reach!
When dining out, do your due diligence when checking out menu items. This past fall we had a waitress swear up and down that the vegan macaroni was safe, nut free, not to worry, etc., but wouldn’t produce the ingredient list, despite my insistence. A few minutes later she came back to say “yeah, you can’t have that, it has almond milk in it.” She was completely casual about it; I was shaking and choking back tears thinking about what would have happened if I hadn’t insisted that she tell us how it was made. Trust your gut—parents have a sixth sense when it comes to the safety of their kids.
5. Plan ahead. If you’re heading out for the day, to a friend’s house for lunch, or even just to run errands, make sure you have some safe snacks for your kiddo. For a while we just didn’t know what was safe so we packed Jonathan a meal and brought it to whatever restaurant we went to. I keep apple sauce pouches and nut free snack bars in my car, purse, and Jonathan’s epi pen bag so that if he gets hungry there is always something safe within reach. When we travelled last month the vegan snack packs on the plane all had nuts and hummus—delicious for David and I, but totally dangerous for Jonathan. However, I had a bag full of pretzels, dried fruit, olives, and applesauce for him so he didn’t have to go hungry. Had I not there would have been no alternatives for him, so it was really good that I planned ahead.
Since Jonathan is still so young he doesn’t have any understanding of his allergies, so at this point he is the least affected by his allergies. In another year or so, when he starts preschool, we’ll have to start work on educating him about his allergies. In them meantime the majority of the responsibility is on me, as I am the one to buy and prepare virtually all food in our house. David is also a champ, reciting off Jonathan’s allergies to babysitters and servers in restaurants!
Irving and I are anxiously optimistic that we’ll get some more answers in April! I’ll keep you posted! Are you an allergy parent? Do you suffer from food allergies? What advice would you add? Jump on over to Facebook and join the discussion!