I remember it clear as if it were happening right now.
After months and months of no weight gain, (13lbs at 4months old and still at 8months old) our pediatrician told me simply and honestly smuggly that I wasn't producing enough breastmilk and we needed to switch to formula. (note...we have a new, phenomenal pediatrician) As a first time mom I was grasping for answers. Sweet Ansleigh was meeting all of her milestones outside of weight gain. She was crawling, pulling up, toddling along while holding a couch, had her pincher grasp down, eating like a horse, smiling, clapping, interacting with us. I just could not get her to gain weight. Since 2months of age the signs were there, had we been with a more up to date pediatrician I feel we would have had answers quicker. HORRIBLE bleeding eczema, hives, puffy red eyes after certain foods, no weight gain. We were simply given steroid after steroid and told she would grow out of it. (These are all symptoms of possible food allergies.)
Not wanting to give up breastfeeding, at 8months old I decided to mix formula into her baby food as opposed to breastmilk. That way we'd continue with breastmilk but supplement during meals. Somehow, it was the first time in her little life I was giving her cows milk. We'd not done yogurt or cheese or anything up until that point. I mixed some formula in with a little bit of rice cereal. I sat down with her in her high chair and gave her two or three tiny bites. That was all she would take. She began crying, screaming, writhing and wiggling. I noticed two or three little dots near her mouth. We were using a new spoon and I began to wonder if she was reacting to it. Naive, food allergies were never even on my radar. She would not calm down. I pulled her out of her high chair and nursing her to try and calm her down. It seemed to work. About 15 minutes later I stood up to get her some more food and she vomited everywhere. Woof...ya'll, I handle the poop, hubby handles the puke...this was EVERYWHERE. While he cleaned it up, I put her in the tubby. STILL oblivious to what was happening, I began to wonder if she was reacting to those three tiny bites of formula rice. Her face looked a little red, but she was playing fine in the bathtub. I gave her some Benadryl we had on hand, got her in her jammies, turned the lights off and nursed her again in the rocking chair. About 20 minutes after I began nursing, she threw up again. At this point, I realized she looked horrible. I took the picture above and sent it to my sister who is a nurse. I know, hindsight it's a clear ER visit. But it took her calmly but FIRMLY responding with "Go to the ER NOW" for me to understand what was happening. My sweet, 8month old baby girl was in the middle of anaphylaxis. At this point, about an hour from initial ingestion, her face was swollen and covered in hives, her body was head to toes hives, like snake skin, she was losing color around her lips and nose, and her breathing was labored. I gave her more Benadryl since I figured she'd thrown most of it up at this point, and we were off to the ER. Multiple rounds of antihistamines and steroids later, her body finally calmed down. We left with a prescription for an EpiPen Jr and the suggestion to avoid cows milk and get to an allergist.
We lived the next few months avoiding any kind of cows milk, I continued nursing so eliminated dairy from my diet as well, and I decided to say screw the pediatrician, as long as she's healthy and hitting milestones, she'll grow at her own little rate. We called an allergist and made an appt for testing once she turned 1 year old. We waited at their advice. (note...we now have a new, phenomenal allergist...I cannot stress enough that YOU are your childs best advocate...if you aren't happy with how thorough and informed your ped or allergist seem...SWITCH!!) I fully expected to walk into that appointment, be told her dairy "intolerance" was gone, and we'd move on with our happy little life. I genuinely did not even think there was an alternative outcome.
After the appointment, I stood in that parking lot alone, holding my now only 15lb one year old, digesting the information we'd received. She was not only still very severely allergic to cows milk, specifically the casein protein, she was also severely allergic to peanuts, pecans, walnuts and eggs. That parking lot moment. Time stood still. I remember processing what this diagnosis meant for our family. How different things would be. How stressful. How unknown. Immediately anxiety and fear hit me in a way I'd never experienced in my life. How the hell was I going to protect our child? What was I going to feed her? How was she going to play with other kids and eat lunch with them as she got older? Will she be able to kiss her boyfriend?? Can I eat dairy and touch her?? Can I eat any of her allergens? What are we going to switch to after breastfeeding? What is cross contact? What the hell is an "igE"? You mean INVISIBLE food proteins on a table or a playground or zoo viewing window from some other little grubby peanut eating kid rubbing their face or hands on it can cause anaphylaxis????? WHAT IS A FOOD LABEL AND HOW DO I UNDERSTAND ALL OF THIS AND WHY DO I NOT HAVE WINE IN MY MINIVAN AT 11AM ON A TUESDAY???
Once I came off the ledge, mostly, I called my husband and cried. I cried and cried. And cried and cried on and off for the next week or two. The diagnoses of food allergies absolutely triggers an odd season of grieving. You are absolutely normal if you're going through that! It took some time, but once I felt like I could move on, I did everything I could to understand what we were now facing. I can honestly say it took me a solid two years to really get a grasp on the scope of everything, and I'm still learning daily. Keeping up with new treatments and theories and staying evidence based takes work and dedication, but it's one of the ways I help advocate for my babies and their ability to thrive! As I've grown in our own little journey, and connect in the food allergy community in new ways as my kiddos are off to school, I realize there is a great gap in education for a lot of food allergy families. Your allergist simply cannot explain all you need to know in the time they can spend with you. If you're just starting this journey, or have been on it and still feel lost, I can confidently say get connected! Facebook groups, instagram, bloggers, local support groups. They're all phenomenal resources! Do your own research, educate yourself into confidence and not fear. If you're in the grieving process, take your time, but once you're ready, pull up those boot straps and get to learning! Know you're supported, loved and will get through this! We've got a long road ahead friends, here's to new developments, a cure one day, and safe eating!!