It’s every mother’s worst nightmare. Your child is hurting and you can’t fix it. My son, Jaxson, started showing troubling symptoms around one month old. He had bleeding diaper rashes, his skin was covered in eczema, and he cried all the time. We tried everything we knew that might help: gripe water, gas drops, countless creams, lotions, and, soaking baths. Nothing helped. Since he was EBF, I assumed it was my fault. I reached out to the BBC moms, and following their advice, cut dairy out of my diet. Within a week, I noticed his diaper rash had stopped bleeding and he no longer cried ALL the time. That was the clue I needed. I made a doctor appointment.
I felt relieved to finally have a hint to what was wrong with my baby. The doctor, however, quickly dismissed me and my suspicions. He told me that my body broke down all the proteins before they passed through into my breast milk and that babies can’t be allergic to foods they’ve never eaten before. I remember feeling so defeated. I didn’t know what to do to help my son and realized that I didn’t have enough knowledge on the subject to argue with the doctor. I needed to educate myself. I researched non-stop for several days. There was so much information to learn! Armed with new knowledge, I made another doctor appointment. This time I was not going to give in without a fight.
I asked the doctor to run a simple blood test for common food allergies on my now 4 month old. He argued, saying that the test results were often inconclusive when performed before a year old and asked if I really wanted to subject my baby to a blood test. I was ready for him this time. I said, “That’s true, the results can be wrong, but they’re more likely to be false negatives, not false positives. Jaxson has suffered every day for the past few months. If an answer is as simple as a blood draw, then that’s what needs to happen. I need to know or I can’t help him.” The doctor hesitantly wrote the order for lab work. I walked out of the office with my head held high. It was the first time I’d been my son’s advocate and it felt so good!
A week later, the doctor was surprised to learn that not only did Jaxson have a very serious allergy to milk, but he was also highly allergic to egg white and peanut. I immediately cut those out of my diet. It was definitely a struggle to learn how to read ingredient labels for allergens and their by-products, especially with two little ones tagging along at the grocery store. I made mistakes, a lot of them. It was frustrating work, but I kept at it.
Jaxson’s symptoms were like a yo-yo. Immediately after detoxing from allergens, his symptoms disappeared. Within a month though, they slowly started to return. A couple months passed and I asked for a more thorough blood allergy test. We added wheat and soy to his list of off limit foods. What was I supposed to eat?
I was really starting to stress out. My days were exhausting and non-stop. I had one child in school and another in daycare. The daycare workers and I kept a journal of my son’s food and skin condition. They took extra precautions to keep him safe, but he still stayed sick. My job as a nurse meant I simply didn’t have a lot of time to pump. I learned to pump while driving, eating, and filling out paperwork. Evenings were hectic, too. I had two dinners to cook, without cross-contaminating mine with allergens. My weekends were cooking fests to prepare wholesome foods for lunches during the week. I was struggling just to pump enough to keep up with his needs. Date nights with my husband were non-existent; I simply had too much to do. I had no way to decompress.
Looking back, I’m not sure how I did it for so long. I was always grumpy with my husband, my milk supply dwindled, and I struggled to keep up at work. I was unhappy and over-stressed. Jaxson was still sick at least two weeks out of the month and had non-stop ear infections. He wasn’t interacting with any the other kids in his class. It broke my heart to see him hurting. I hit the point where I was willing to throw every possible treatment at him, just to see what stuck. Anything had to be better than this.
At one year old, Jaxson started seeing a chiropractor weekly. She explained the link between our nervous and immune system and as a bonus suggested safe foods for us to try. We started noticing he was sleeping better at night, his skin was clearing up, and she finally got rid of the ear infection that he’d had for so long. We went to an ear, nose, and throat doctor and Jaxson had tubes put in his ears. We started working with a speech therapist who told me that his speech delay was due to hearing damage from his constant ear infections. He would improve over time and with practice. We ordered new blood allergy tests, this time including every food in my diet. It felt good to be proactive and I believed we were through the worst of it.
When I received his test results back, I was devastated. Jaxson went from being allergic to 5 foods, to being allergic to over 20. I cried… for days. All my staple foods were making him sick. I didn’t know what to do. I had already been surviving on a handful of foods for nearly a year and felt so deprived. I attempted to follow his new diet for a couple months, but it was no use. I decided that I had to do what was best for me. When he was 16 months old, I quit breastfeeding.
The shame and guilt I felt for stopping breastfeeding was intense. I felt like a failure. My son needed me now, more than ever, and I wanted a break. Depression overcame me and I would lie awake at night wondering what else I should have done differently. I think every mom has this feeling from time to time, the self-doubt that comes with being a child’s main source of care, nourishment, and support. I came to realize that I had done everything I knew to do. I wasn’t perfect, but I did my best. That’s all you can ask from anyone. I learned so much about my son and myself and that knowledge is priceless.
I decided that since I wasn’t nursing anymore, that I needed to do anything and everything I could to make his life easier. I quit my job, brought him home, and began spending countless hours in the kitchen preparing new recipes for him. Within a couple months, he was a new child. His speech was starting to improve and I saw a light turn on inside of him. It was beautiful. I was renewed again, finally able to give my son what he needed most, all of my attention.
Jaxson is now two and a half years old. He still has most of his food allergies, but our most recent round of blood testing shows that they are starting to improve. We are continuously learning new ways to treat his eczema and his skin is clear most of the time. Also, he hasn’t developed any new food allergies in almost a year. Most importantly, he is happy, well adjusted, and loved.
To all the moms out there who have felt the pain of watching your child suffer, don’t give up. Educate yourself and never stop being your child’s advocate. Give yourself a break; you need rest and nourishment too. It will get better, I promise. Until then, keep at it and don’t be afraid to reach out for help.
Amber is a stay at home, mother of three kids. She recently delivered her third child with the support of Tiara, a WMC apprentice doula. She is a fairly new stay-at-home mom, who stays busy homeschooling her kids and, of course, caring for her food allergy child.