“He struggled to breathe, and I froze. I forgot how to use the EpiPen. I was shaking. My mother sat next to me on the kitchen floor, trying to talk me out of using the EpiPen. ‘Let’s just try some Benadryl first,’ she said. I argued with her. I knew what I had to do… but I couldn’t remember how to do it! I pulled the EpiPen out. It was a new brand, we had just changed the month before. Oh, thank you, Jesus, it talks to me and tells me what to do! I held my son down and plunged the epinephrine into his thigh. 3… 2… 1… he began to breathe with ease! Instant relief.
That day lessened my fear of using the EpiPen, but for my older food-allergic son in the other room, it increased his ten-fold. And the next year, when we would go through this all over again, my older son would go into his room, curl up on the floor all alone, and plunge his fingers into his ears to block out the cries of terror from his younger brother as my husband and I would administer the EpiPen for a second time to save his life. Food allergies are hard. They’re really hard. And few understand unless they’ve had life-threatening allergies, or walked in the shoes of a food allergy parent.
I didn’t have an easy pregnancy with Jase, and I didn’t have the ideal birth I had envisioned. After he was born, the hospital staff took my son for 4 excruciating hours as they monitored his low blood sugars, and then used fear to pressure me into allowing them to give formula to help raise his sugars. I caved and said yes. I didn’t know it then, but when I later looked back on photos and saw the tell-tale slapped cheeks look that would become a common occurrence through his first few years of life, he did in fact react to the dairy-based formula.
The first 4 weeks of his life were difficult, as it often is with many newborns, but more so with Jase. At one month, Jase received his Hepatitis B vaccine. Within 2 weeks, things began to take a turn for the worst. Jase had blood in his stools, reflux, would scream when nursing, eczema flares with the looks as if he had been slapped across the face, horrific diaper rashes that looked like giant burns you could actually see pulsing… the list goes on. What in the world is wrong with my child?! We went to our family doctor, GI doctor, allergist, lactation consultant… they assumed an intolerance, allergic colitis, and poor Jase went through blood testing, skin testing, and even allergy patch testing.
‘Well, you can cut out XYZ foods… or there is formula,’ they said as they would load my arms up with samples of formula, the apparent only solution to this problem. I wasn’t ready for this. I didn’t have a peace about stopping nursing. It would be a sacrifice, but I was determined to find out what foods Jase was reacting to through my breastmilk. I began cutting out foods, keeping a strict food diary. I finally got down to just a few foods, but when I would go to add the suspected problematic foods back in, he would react again! I just couldn’t win.
Every day I would eat the same exact foods: oatmeal with blueberries and bananas for breakfast, sausage over rice for dinner, and as many potato chips as I could stuff into my mouth just to up my caloric intake. I knew nutritionally, this was not good. But I also knew he was probably getting what he needed, but he just might be sucking the nutrients from me or my bones. I was the one more likely to suffer the ill effects, but it was something I was willing to sacrifice for my son. I ate these exact same foods for 8 months. I vividly remember, on multiple occasions, gagging when I was eating my sausage and rice. I could barely stomach to even get down another bite, that’s how sick of the food I was.
When it was time to introduce solid food to Jase, he reacted to almost every single one. This isn’t normal, I thought. I felt so alone in this struggle, so weary of the doctor appointments that had me feeling like I never had any answers. By the time Jase was just under 1 year old, he began reacting to the only safe foods I had been eating for months. I had just dropped below 100 pounds and I knew it was time, I couldn’t keep on nursing anymore. My body was suffering, and now he was reacting to the only safe food he had. We had to switch to formula.
After the agonizing switch to formula that took almost a month as Jase rejected any sign of formula mixed with breastmilk and rejected almost every bottle possible, he finally was on formula as his main source of nutrition. Formula wasn’t cheap, though, especially hypoallergenic formula! We had to apply for medical assistance, and while we waited, we applied for a medical grant through United Healthcare Children’s Foundation. We were approved for the grant, which covered our formula costs until medical assistance was approved, and picked up the remainder of the costs following insurance.
While we waited for both of those (amazing blessings!), we had to purchase formula through eBay. We couldn’t afford full price, so I would buy in bulk on eBay and hope I wasn’t getting someone illegally selling their WIC formula. I was desperate, and I needed to feed my child. Around 15 months, our pediatrician made mention of another family who seemed to have similar symptoms. They had something called FPIES, Food Protein-Induced Enterocolitis Syndrome. I had no clue what this was, but I was thankful when our doctor connected this family and me to discuss our experiences.
This also came on the heels of our GI doctor suggesting we go to CHOP (The Children’s Hospital of Philadelphia) and request to be seen in their FPIES clinic. Perhaps this was finally the answer to what was wrong with my child! But everything I read when I researched this, Jase did not seem to fit the typical FPIES child. We were accepted into the FPIES clinic, Jase was seen by the main allergist and immunologist there who specializes in FPIES, and we learned there is a spectrum with FPIES. Jase had chronic FPIES, and not the typical, acute vomit-to-shock, more notoriously linked to this condition. Chronic FPIES, but not just to one or two foods. Chronic FPIES to almost all of them.
By two years old, Jase had two safe foods: lamb and mango. The problem was, Jase refused to eat the lamb and mango was becoming his daily food next to his formula. Every single food he would pass and not react to, he would lose within 1 to 3 months. He would have a safe food for a short time, and then it was gone. We couldn’t understand it. Watching my child suffer brought me to a new low, and loneliness. People on the outside had no idea how bad the struggle really was, as he was a chunky baby and looked perfectly healthy! No one could relate and if they could, I didn’t know where to find them.
Along with FPIES, Jase also tested positive to several food allergies. FPIES is a non-IgE mediated allergy, while food allergies are an IgE mediated allergy. Both affect the body differently, but some symptoms can overlap, making things even more complicated for the families who deal with both. Then I was pregnant with my youngest son, Eli. Would he suffer from the same problem? I read often more than one sibling has this condition, so would I have to go through this again with my second child? Could I handle it again? The answer was no. I couldn’t handle it again. Not without Jesus, that is.
Eli did have FPIES, too. And Eli did react to almost every food, too. And for a year, I did this again, eating the exact same few foods (though different from Jase, as they had some different triggers), and by a year old, when I dropped below 100 pounds again and God gave me the peace it was time to stop nursing, Eli then went on to formula. But then a change! Eli grew out of FPIES by a year and a half, and Jase grew out at 3 and a half years. More foods became safe, and I would cry as they would eat new foods they’d never tried and not react. We were turning a corner!
However, with the good lingered the not so great. Both boys still had IgE food allergies, and ironically to the EXACT same foods: dairy, egg, wheat, peanut, soy, and some tree nuts. Great. Just some of the major foods out there. Later, we would add sesame to Jase, and animals and environmental allergies to both boys. I loved to bake and cook… but now what would I do? Finally, they can have more food but not enough to actually allow me to cook any of the meals I knew how to make. I was grateful for more options, but still struggling over the lack of options at the same time. It was a strange place to be in.
Jump ahead with me now. Eli is 4 years old, and Jase is 6 years old. Eli has his first anaphylactic reaction. One year later, Eli has his second anaphylactic reaction, this time to wheat when I accidentally fed my child the wrong chicken fingers one night. Do you know what it’s like to feel like you’ve poisoned your child? To know you gave them the food which could have taken their life, a simple mistake? You, the most diligent person to keep your children safe, checking and double checking labels, calling food companies, packing every single food and snack for every single outing, and making sure to have extra in case something happened because literally nowhere is safe, you, you made the mistake.
It’s a horrible feeling. It leaves you on your knees crying out to God in thankfulness for being the one who has the final say over my child’s life, despite my failings and mistakes. But also crying out, just to cry, over how easy it was to make the mistake. How can I ever trust other people with my children’s food? Mistakes have already happened with others, and now with me, of all people. So I can do one of two things here. I can either lie down and let this food allergy thing roll over and through me, destroying me piece by piece. Or… I can turn it to good, and see the blessing it has actually become, and I can fight to raise awareness so in turn, my child, and other children like mine, might stand a better chance of being accepted and SAFE in a world filled with foods that feel horribly unsafe and life threatening to our food allergic children.
I learned some valuable lessons through all this. One, I learned more about nutrition and how to feed my child. Two, I learned how to cook and bake for my children, with foods that may actually taste ten times better than their allergen-filled counterparts! Three, I learned to never take food for granted. And lastly, I learned I couldn’t do it without God… like… AT ALL. When I was down in the pit of loneliness and discouragement, I watched as God lifted me out, gave me peace about things, answered prayers, brought people and doctors into our lives, how He blessed us in so many countless ways, it was overwhelming. I watched as He moved through this trial in our lives to even reach others, and strengthened the faith in others (and myself) as I waited on Him in prayer for certain decisions surrounding our boys.
Though it has been incredibly difficult, without Him, I would have absolutely collapsed under the strain of it all. It’s only because of Him I can stand here in thankfulness for what He has taught me through it all. I graduated with a degree in elementary education, and now I’m a mother with children with food allergies. What can I do with this? I’m in a unique position where I can understand the importance and seriousness of food allergies and can educate teachers and children in a fun and educational way. Most people don’t realize that things like Play-Doh contain wheat, tempera paint can contain egg, soap can contain tons of different allergens, and every surface you touch you can actually leave food allergens you can’t even see.
All of these things, and many more, pose threats that are often life-threatening to food-allergic children. So, with my food allergy curriculum I created for schools, teachers, and students, my hope is we can raise awareness, which in turn increases acceptance and understanding among students and staff, and we can actually raise up friends and peers who know how to be able to identify a food allergy reaction and how to be a help to their friends, as opposed to being a deer caught in the headlights if, or when, a reaction does happen (which may be much more often than you may think). It also lessens the chance of bullying, and for this reason alone, it is worth it.
I remember being so mad growing up we had to have safe food at family parties all because of my dairy-allergic brother. Why should everyone else have to change and cater to HIS needs, I thought! If HE has the problem, it’s not MY problem, why should we be expected to change for him! Then I became a parent of two children with life-threatening food allergies. It was never about my mother having a selfish request for safe food for my brother. It was about his life, and his safety. My careless, selfish response stares me straight in the face as I see other parents respond very similarly to the way schools handle not having certain allergens in their schools or classrooms. I was so naïve.
And unfortunately, without education, so will everyone else be who hasn’t walked in the shoes of someone with a food allergy, or as a parent of someone who has one. This was my brother! And still, I had a minimal understanding. We need to educate others on the seriousness of food allergies, but also with the understanding that food allergies do NOT define the person. It’s just something they have. It’s not who they are. I won’t sit here and pretend this journey has been easy, or that I’m always doing great. It’s not, and I’m not. I still have moments where I break down and cry. I still pray for my children to be healed.
I deal with PTSD over food, have nightmares over my children dying in my arms, and have broken down in sobs of fear when my children first started eating baked eggs after passing a food allergy challenge. I know I will get through it. With the strength of Jesus, I will get through it. He can be the strength I don’t have, and I will keep pushing up this hill. If you know someone with a food allergy, be compassionate and understanding and be willing to make changes to keep these kids we love safe. And if you’re a parent of a food-allergic child, I want to give you the biggest virtual hug. It’s not easy. But I tell you, you’re not alone even when it may feel like it. Turn to Jesus, he can handle the biggest trials, even this one.”
This story was submitted to Love What Matters by Tina Rewkowski of Pennsylvania. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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