Five years ago, our daughter made a little friend we shall call Miss K. They would run around the playground and play dress up while the moms had a little time to talk and the girls became fast friends. We quickly learned that Miss K had a dairy allergy, which we knew very little about at the time. Her parents took the time to educate us and we looked on as they toted Lysol wipes and her epinephrine everywhere. We asked questions and tried to understand. But we knew that we didn’t fully understand what it was like for them.
Fast-forward four years to 2013. The girls were still friends and had been in one another’s classes for several years. We knew what we could and couldn’t bring for snack-time and thought we understood what had to be done to keep Miss K safe. We were about to be in for a huge lesson though…
When our newborn son was a few months old he started having these “episodes,” which we now realize were actually allergic reactions. Exclusively breastfed, he had never had anything other than mommy milk. My (Holly’s) diet wasn’t restricted at all, so I ate pecan pie and drank skim milk by the gallon- milk was actually one of my favorite beverages. We went out of our way to buy organic body wash and lotion, thinking we were giving our child the best. But we soon started to notice strange rashes. At first it was scaly spots, but we found that he would have these strange bouts where his entire face would swell up with bumps, his eyes would swell and he would make a wheezing sound. I told Chris that I didn’t think something was right, but he said he a) was just making cute baby sounds and b) he must just have sensitive skin. By the time he was 5 months old we noticed it happening more regularly, with no identifiable trigger. His “cradle cap” was so severe he would scratch his face and head as well. I mentioned all this to our pediatrician, as well as the fact that a friend had suggested maybe he had a dairy sensitivity, but she dismissed it. We ended up switching pediatricians and one of the first things he did was discuss the severity of his cradle cap. He said he must just have sensitive skin, and that we should treat it with hydrocortisone. But then it got worse. And worse. In a very short time. We trimmed his nails and rubbed his head with a baby brush, but it wouldn’t relent. And then one day he woke up from his nap with blood covering his crib and head. Blood was literally dripping down his face and soaked into his sheets. As I walked in the room I freaked out before I realized his “cradle cap” was so bad that the top and back of his head were literally peeling off in chunks. His face was covered in scales as well. Later that day, I gave him a bath and coated him down with his organic lotion when I noticed his face getting rashy again. This time I thought to take a picture…
Completely confused, I sent Miss K’s mom (a nurse) the photo asking for her input. She said “That is exactly what Miss K looked like when she was a baby. I would talk to the pediatrician about the possibility of food allergies. I’m sorry.” I took the input and made an appointment the next morning with the pediatrician. I didn’t mention what Miss K’s mom had suggested, but instead just showed him the snapshot I’d taken and watched as he assessed little man’s scalp. He was quiet for a few moments and then said “Yes… This is eczema. Some eczema is normal, but this is about to get infected. We need to do testing for food allergies.” At that moment I was floored. How could someone have food allergies if they’ve never even eaten anything???
The next couple of months were a blur. There were blood tests, allergist referrals, and lots and lots of learning to do. He was diagnosed with a severe dairy allergy and I abruptly removed all dairy from my diet as well. We became more aware not only of the obvious foods (milk, ice cream) but of the products with dairy hidden in it as well – like that lotion I had been rubbing all over him!
Around the time we started to get a handle on his dairy allergy he had a severe reaction that almost warranted epinephrine. We were perplexed by what had happened though (because we were living dairy-free), so we hesitated and instead took him to the allergist for treatment. The snapshots, below, were taken that afternoon before things got even worse for him. (This makes me so sad looking at it!) Fortunately, he did not progress to full-blown anaphylaxis and the allergist was able to dose him with steroids, giving us instructions to continue them for 24 hours.
Upon realizing he may have gotten a dab of peanut butter into his mouth accidentally, the allergist urged us to move forward with more testing. In my head, I was 100% positive that he didn’t have any nut problems because they hadn’t shown up on the blood test. It must be some hidden dairy in the crackers I’d given him! The skin prick testing proved otherwise… The following picture is from his skin test, showing his reaction to the major and minor dairy proteins as well as various tree nuts and peanuts. The allergist said that if it wasn’t for the controls reacting as they should then she would have thought something was wrong with the test. But there wasn’t.
And so we started a new phase of food-allergy life. He was still exclusively breastfed and I underwent weeks of a withdrawal diet, slowly removing and adding foods into my diet and logging every reaction – major and minor. This third round of testing provided evidence that he did indeed have food allergies so we removed all peanuts and tree nuts from our diet and also made the decision to remove them from our home completely. We then slowly started introducing new foods, which is when we discovered he’s also allergic to seeds. (Tahini = seeds! I didn’t even realize that)
Now, a year later, our lives look radically different. We cook almost exclusively with fresh, organic ingredients and our little man has what’s likely the most wholesome and healthy diet on the planet. We continue to consult with our amazing allergist and pediatrician and we have hired a nutritionist to review his nutritional intake – something we found to be incredibly helpful. We rarely ever eat out and if we do then it’s only when our son isn’t with us. He’s doing well and staying healthy, but since he’s so young he loves to put everything into his mouth. Plus, he can’t verbalize how he feels (although his face is pretty expressive). When we want to socialize, we invite friends over and ask them to leave their food and drinks at home. For his first Halloween with diagnosed food allergies, we made “safe” treats ahead of time and delivered them to our friend’s houses so he would feel included.
It’s been scary. Isolating. Stressful. But every day we find ways to make the food-allergy life the new norm and make living with severe allergies a little less scary. We want our children to grow up in a world of joy, beauty and fun. And that’s what we strive for every day.