OUR FOOD ALLERGY STORY | PART ONE
It has taken me a long while to sit down and write this story. I think I have tried to block it out of my mind, all that I went through to figure out what was going on with my babies. This is by no means comparable to what many families I know have gone through or are going through in terms of family medical issues, terminal illness or anything where their child cannot be managed at home without medicine. And I am grateful every day for the health of my children and family.
This is my personal experience with severe food allergies, and is not medical advice for diagnosing or treating food allergies and symptoms. But, it is my way of sharing the details of what we experienced with two of our children, in hopes that it will help another family or sleepless baby and mama, get some comfort. The support I received by a friend going through this was immeasurable. I am passing it forward. Please pass this on to anyone who you know, who may be dealing with food allergies.
My oldest son had no food allergies.
When my middle son was born, he had rows of quarter size welts down his legs at birth. My mom (who is a nurse) noticed them and said they looked like hives. The neonatologist on call at the hospital commented that they were most likely “baby acne”. I remember thinking that was somehow not going to be true. They did go away in those first few days. Off and on for the first few weeks, my son would breakout in rashes. I would dismiss them each time as a heat rash or the results of sensitive baby skin. As the early weeks went by, the typical sleepless nights ensued as expected at this stage. At around 3 months of age, during the holiday season, I noticed a more severe rash covering his face, scalp and stomach. This was coupled with bouts of uncomfortable, inconsolable crying. And the nights and days were longer and longer as I managed to temporarily soothe my infant through nursing him and rocking him. I would often nurse him every 15 minutes throughout the night to get him to stop scratching until the point of bleeding. There was the occasional week where he seemed somewhat better, but quickly the rash and crying resumed. At a well check with my pediatrician, she asked about food allergies. I explained that my sister had multiple food allergies, and once had an anaphylactic reaction to egg at a year old. She immediately thought I should stop eating a few foods in my diet, as I was breastfeeding. She suggested the first, most common culprits: egg and milk. She advised me to eliminate one at a time for two weeks minimum to be able to tell if it made a difference.
I eliminated one, then the other and after more weeks of the same, felt exhausted and defeated. I was also returning to my corporate job after maternity leave and had hired a new nanny for my 2.5 year old and 3 month old. It is hard enough returning to work after a new baby, but couple that with absolutely no sleep, a screaming baby all night long and a diminishing diet. There is a reason why food and sleep are top priorities in the human life. My instinct was to keep eliminating food. I sought out advice from an allergist. After going to two allergists, and multiple blood tests and skin prick tests on my four month old, the results were all over the place. He was positive on RAST blood work for the following: peanut, tree-nuts, milk, soy, corn, tomato, egg, wheat, barley, rye, sesame, garlic and oat. He was covered in welts and eczema for the skin tests, that they couldn’t even measure accurately the newly induced hives from the test. One allergist told me she had never seen a patient this bad. They asked if I wanted to put him on an antihistamine and steroids. The next allergist I visited told me that a few of these were life threatening, while the others could have various effects like vomiting, GI bleeding, mucous in stools, etc. And I even had an allergist tell me that he had never heard of a baby having side effects from a breastfeeding mother’s diet. All of this was beyond frustrating. I remember crying at night, while my baby screamed in pain and realizing that the way I was naturally consoling him (nursing) was also hurting him. I cried a lot. My husband felt terrible and we were both exhausted. While other moms were talking about “sleep training” and bragging to each other about how many hours their baby slept through the night by the age of 8 weeks, I was thinking how many minutes he slept in a row, in my bed or in his bassinet.
I went back to my pediatrician, who realized I was exhausted, both physically and emotionally and said I could always try formula, but with his allergies, it would have to be the hypoallergenic version, which was made of corn syrup solids. She said that obviously this wouldn’t completely solve things, and could make things worse, as he did test positive for corn. If I tried formula, I would lose milk supply and my doctor also commented that she had a baby develop GI bleeding from formula who was allergic to even the hypoallergenic version. I knew in my mind that breast milk was best for building his obviously compromised immune system. I also knew that I would have to keep eliminating foods to find out how to heal him.
I turned to the internet to do some of my own research at the same time. And I found on a search for “elimination diets” and “multiple food allergies while breastfeeding” a mother who had recently gone through the same thing with her daughter. She was starting a company after creating her own organic, soothing balms for her allergic baby’s skin. Her story, similar to mine, was in her company’s website “About page”. I emailed her right away. I still to this day cannot believe how great a feeling it was that there was some other mom who I could reach out to and ask her for help with all my questions. She emailed me back with advice and support immediately. That friend was Diana, from babybearshop.
I slowly stopped eating allergens one by one. One week it was soy, two weeks later corn, then wheat and so on. I started to see windows of healing for my baby. Mostly in his sleep patterns. Instead of waking every 15 minutes crying and scratching his body to the point of wounding himself, he was waking every hour or sometimes two hours. And when these healing moments would fade, I would make myself crazy with analyzing what I just ate, could it be the tomato? or the garlic? and it was a long process of feeling like food was the enemy. At this time I also decided to take an extended family medical leave (unpaid and did not secure a position upon my return) from my corporate job to focus on trying to heal my son. How shocking, right? I fired my terrible, over-paid nanny who I caught reading a romance novel while my baby sat in a bouncer seat facing another room and who told my toddler that he could not taste “her banana” because it was ” her lunch” and “his mom should get him his own” making him cry and tell me about it after. The firing was one thing that felt good. And then after another month, I decided to not return to my sales job at all. The position was being moved to a city north of ours, and I would have to be away for training for 6 weeks. It was impossible for me to be away from a completely nutritionally dependent 5 month old for any length of time, let alone 6 full weeks. Not to mention I also had a toddler. Our income would be cut in half, it was a huge risk and a scary thing to do for our family. But I was barely awake during the day, barely eating anything and my top priority always has been my husband and children. Sometimes providing for our family or children is not just in a monetary way. I felt that my baby needed me at home to heal him and I would do this with a substantial monetary sacrifice. My husband was very supportive and if anything, was the encouraging factor.
My baby’s body was still covered in eczema and his ability to sleep at night was still compromised. His eczema was still oozing and bleeding. His crib sheets and bumper pads were marked from scratching his skin until raw with blood streaks every day. I visited a third allergist who said to try water therapy for his skin in addition to the elimination diet. He instructed me to give him 30-40 minute baths as often as 3/times a day. If you know anything about bathing a 5 month old, this is a challenge not to mention a time-sucker when also caring for a 2.5 year old toddler. After the bath, and while completely soaking wet, I would slather on Aquaphor mixed with OTC Hydrocortisone ointment and cover him in a footed sleeper. There were stronger cortisone creams, foams and steroids to control the eczema, most not approved for use in babies. My instinct was to heal him from the inside out. My Dad, a Gastroenterologist, did agree that what was happening on the surface of his skin was rooted in the gut. I followed my instincts.
It wasn’t until I was down to eating the following foods that I began to see real healing of his skin and GI tract: turkey, rice, potatoes, lettuce, pears, olive oil, broccoli, carrots and mustard for flavor. I list olive oil because that is how bare bones my diet was at the time. I continued to eat this for 9 more months, until I weaned him at 14 months old. I would eat turkey burgers, heavily supporting a local turkey farm, every morning and evening many days. I ate rice and potatoes in every form and made up recipes with these minimal ingredients to get through the days. My husband would cut up potatoes to make homemade fries (he became an excellent julienne chopper!).
Family members and friends would always comment that they didn’t know how I was able to do this for so long. But, I was motivated by sleep (!) for both my son and myself and by his skin and body slowly healing. By 8 months old, his skin rash was localized to his face- his cheeks mainly. He was sleeping better. And by his 1st birthday, his skin and gut were completely healed. He was eating a very small diet in addition to breast milk. We tested him again after his first birthday (RAST blood work and skin testing), and found that a few allergens were already gone.
Did I mention that during those long days and nights that I started sewing up the first joyababy clutch and started that business? If I was awake, many times I would just sew. There were also no play dates as a toddler because of how much toddlers share and touch everything. I rarely hired a sitter unless I was home at the same time, because I was worried and stressed about him grabbing the wrong cup, or being served the wrong milk or snack.
In 2009, we moved to Chicago and had an amazing allergist in the city who offered so much support. She was able to help me see that his numbers were actually getting better. She gave me constant confidence that he would be okay and outgrow many allergens. When results were negative, we completed food challenges to successfully add eggs, tomato, corn and all vegetables and fruits into his diet. The first time he had broccoli, he wanted it for breakfast, lunch and dinner every day. The first time he had strawberries, he almost cried. And the first time he tasted a taco (corn shell, ground turkey, lettuce, tomato and shredded rice cheese) alongside his family, he was truly overjoyed. I documented these moments, like a baby’s first step.
I became a cooking machine. I wanted to make him a version that he could eat with all of his new ingredients to be side by side with us at meals. It was a fun challenge, that even my mom (his grandma) enjoyed. We both loved to cook prior to this and we would chat on the phone about recipe ideas for upcoming holiday gatherings. It was more manageable and the resources for cooking with food allergies increased. He was off to school, with his allergy safe lunch and he was able to understand his allergies and help himself stay safe. My son is now almost 7 years old and is a healthy, smart, athletic and joyful kid. He is still allergic to nuts, milk, wheat, barley, rye, oats, sesame and garlic.
I was able for the first time to relax when he was about 5 years old. Just enough, to have a third baby.
I became pregnant with my third baby in 2010. At a routine visit for my middle son with the allergist in Chicago, she congratulated me on my expanding baby bump. At the same time, she told me that there is a chance that this baby could have food allergies, and wanted to know if I was open to taking some probiotics. She said it may or may not help, but it could only be a good thing. I started taking probiotics every day in addition to my normal vitamins.
In November of 2010, we welcomed our third baby boy! He was a healthy baby with no signs of rashes or welts. Then at around two months old, he started breaking out in a severe head to toe rash.
In PART TWO of our food allergy story, I will share my third son’s food allergy story with more documented photos and how we managed to heal his body. I did not take as many photos, if at all, of my middle son when his skin was severe. But after having another baby with severe food allergies, I decided to document what was happening through photographs in hopes to share these and help another family.
I will plan to continue this discussion and share tips, allergen free products we have come to love, recipes and more at rajovilla.com. Please feel free to engage in the conversation! Do you know someone who has a child with food allergies? Or struggling with severe eczema?