Our Family’s Journey with Food Allergies

Looking back on the early days of Stevie’s life, the signs were there. The colic and reflux began the night we came home from the hospital.  She seemed to spit up everything she ate. She screamed from 8 p.m. to 5 a.m.

After six torturous weeks of zero sleep and a baby who was clearly in pain and resembling something from The Exorcist (she would spit up constantly and it would often fly clear across the room), our pediatrician recommended cutting certain food items out of my diet since I was breastfeeding. Really? Dairy?  I had been living off casseroles and pizza that our friends and family kept delivering. I was drinking huge amounts of coffee with cream as I only slept about 2 hours a night. But I had tried veganism once in college and was willing to try anything if it meant an end to colic.

I kept a spreadsheet and attempted to be diligent about it. I was too sleep-deprived for perfect execution; however, I did see a pattern of improved sleep and moods after several solid days of a zero-dairy diet. I didn’t notice the correlation but on the days we would supplement with formula (when I needed a break or when we were worried she wasn’t keeping enough milk down), she would develop a full-body rash. We didn’t think about the formula containing cow’s milk, that’s how tired we were. We weren’t trained in reading labels like we are now. Dairy is in everything.

Fast forward to around 6 months of parenthood. Stevie’s reflux disappeared and her pediatrician said she could try some solid foods. Cereal and pureed fruits and veggies were introduced without a problem. One night, we went out for ice cream and she clearly wanted a bite. What the hell. Colic was over. Maybe she could tolerate a bite? Surely she grew out of it.

I did not know that people could have a dairy food allergy. I thought they could only be lactose intolerant. I thought people were allergic to peanuts and shellfish. But ice cream? Little did I know that one bite of dairy would almost kill my child. Among a handful of other things.

Three ER visits, two Children’s Hospital overnight stays and four different allergy doctors later, we now have a clear diagnosis that Stevie is severely allergic to dairy, eggs, peanuts and tree nuts. Through diligent research, label reading, home cooking and a lot of helicopter parenting, it has been 14 months since our last anaphylactic incident.

***I am not a medical professional and I highly recommend speaking to a doctor before taking any of my advice. If you’re looking for a local allergist, we love Dr. Maya Gharfeh at Oklahoma Asthma and Allergy Clinic.  If you are struggling with affording the rising cost of EpiPens, we have found AUVI-Q® to be much more affordable.***

3 things I didn’t know before raising a child with severe food allergies:

1. Food is everywhere. Our culture revolves around food. Birthday parties. Trick-or-treating. Going out to eat at a restaurant. Traveling. School lunches. To someone with a food allergy, life outside the home can be extremely difficult to navigate.  (It can be done! Just come prepared.)
2. Food allergies are becoming more common. 1 in 13 children has a food allergy.
3. Currently, there is no magic cure for food allergies. (But there are some treatment options.)

Top tips for raising a child with severe food allergies:

1. It is devastating when you receive the diagnosis but it’s important to know that you’re not alone and there’s an entire community of parents going through the same thing. Living with a food allergy can be done.
2. Educate your family, friends and your child’s caregivers about their food allergy and the symptoms of anaphylaxis. It’s better to be the “annoying parent” than take any chances.
3. Always read labels. You would be surprised how many products contain the top nine most common allergens (milk, egg, peanut, tree nuts, soy, wheat, fish, shellfish and sesame).
4. Always keep Benadryl and two Epi Pens on you at all times. “Epi First, Epi Fast”
5. Have hope and take it one day at a time. Day one is always the scariest. Therapy and treatments are being researched right this second. Also, many children will grow to build a tolerance and can consume their allergens with little to no reaction. Yours may be one of those lucky ones! Staying positive is a daily practice.

Steps to take if you suspect your child has a food allergy:

1. Take them to an allergist! They will perform a blood and skin test to help find answers. They can also perform food challenges in the office and are prepared to intervene with proper medication if your child has a reaction. It’s much safer to try food under medical supervision than at home.
2. Carrying two Epi Pens and antihistamine at all times.

Things I wish other people knew about food allergies:

1. Parents of children with food allergies do not expect others to bend over backward for their children. That’s our job. We’re more than happy to bring safe snacks and meals with our child so they can be included in everyday activities. However, we do ask that others take our concerns seriously and not feed our child anything that we have not approved.
2. Food allergies are not intolerances. Food intolerances do not involve the immune system. Food allergies can be fatal and even tiny amounts of an allergen can trigger anaphylaxis.
3. Peanuts get a lot of attention as the most severe allergy but any food that someone is allergic to can cause a life-threatening reaction.

Having a child with food allergies has made my husband and me better parents; we’re a tightly knit unit. I often tell people that anxiety is our superpower. Our diet is definitely more colorful and plant-based as we often avoid Stevie’s allergens in our own meals. We are so grateful for an otherwise happy and healthy daughter and the physicians and caretakers who take her condition so seriously.

While we are currently avoiding all of Stevie’s food allergies and learning to live with this new reality, we recently enrolled our daughter in a food allergy drug trial that has shown promising results to help develop tolerances in some patients with multiple severe food allergies. We are attempting to try every solution to make her life as safe as possible but are mentally prepared to practice strict food avoidance for the near future. Perhaps I will have a Part II to report back at the end of this multi-year experiment.

Victoria Still lives in OKC with her husband Carter and young daughter Stevie. She is a vocal advocate for Food Allergy Awareness and has lobbied at the capitol, shining light on the growing number of children with food allergies and rising costs for life-saving drugs like the EpiPen®. She is also the owner of The Social Spell, a local social media management company. Follow her on Instagram at @victoriastillokc.