Before I share our journey, I want to preface this post with this statement. While we walked a hard road to get where we are today, Jack does not let his food allergies limit him and we will not let them. He is one of the sweetest and happiest toddlers you will meet (well…until it is time to do something, he doesn’t want to do…because keep in mind he is a toddler and tantrums).
In the age of social media, we have all seen the memes, the comments, and complains about how schools are ‘nut free,’ teachers/day-cares encouraging food-free parties or providing lists of safe foods for parties. I always acknowledged them, but it never personally affected my life, until my son was diagnosed with severe and life-threatening food allergies at the age of 8 months.
I had always joked when I was pregnant with Jack, that he would probably live life in a bubble. I suffer from seasonal allergies and asthma, and my husband also suffers from seasonal allergies, asthma, and eczema. When it came time to introduce solid foods, I followed Feeding Littles and took their Baby Led Weaning course. I did a mixture of purees and solids.
His first reaction (though I was not even positive it was a reaction at the time), was when I gave Jack eggs for the first time. They were scrambled and served in strips for him to pick up. I had also served strips of peanut butter toast in the same sitting (do not do this, it is not recommended to serve two potential allergy foods when introducing solids). However, he did not react to peanut butter toast with his first exposure, so I did not think anything of it.
Of course, he got super messy, so I gave him a sink bath and noticed he had red splotches on his neck and chest. I made a note of it, snapped a photo, and then we continued with our day. I had given the OK at school (which happens to be nut-free), to proceed with giving him solid foods. Slowly, the phone calls started to trickle in, “We noticed he started to itch, get red spots after we gave him, “X and X.”
Once the reactions were becoming more frequent, we made an appointment with an allergist. We did not think it could be nuts, daycare is nut-free, and we hadn’t seen a reaction when I had given him peanut butter toast. Did he have a gluten allergy? Eggs? What could it be?
He received his first skin prick test at eight months old, followed by his first blood draw. Peanuts. Tree Nuts. Dairy. Eggs. Wheat. He showed a reaction to it all. With allergy results (again, I am not a doctor and just sharing our experience), there is a scale between 0-6, zero indicating no allergy, 6 indicating severe or anaphylactic. Jack scored a 5 for both peanuts and eggs. A 3 for dairy and wheat. We would test six months later to find out he was also highly allergic to most tree nuts scoring a 5-6. We were prescribed an epi-pen and they suggested Benadryl as well. Every reaction could be different and thankfully we have never had to administer the epi-pen, it is up to you and your allergist to develop the best plan of action if a reaction were to take place.
During this time, it was suggested that I remove all his allergens from my diet as I was still breastfeeding. I tried this for a week but then decided it was best to continue to eat them as he did not show a reaction to my breast milk. It was during this initial diagnosis that I started to develop my own anxiety about feeding my child, about daycare feeding him, let alone leaving him with friends or family who were not educated about food allergies.
I joined support groups on Facebook and realized I was not alone in my initial fear of his diagnosis and that there was a normal life to be led once you figured out safe foods and menus that could help your child led a normal life, with education and preparedness. I reached out to a dietitian to help decipher what safe and nutritious food we could give Jim. Jack was already considered small for his age and on the growth chart and now I had all these foods I could not feed him. You do not know how many foods contain egg until you must read every single label. Or figuring out if it’s safe to feed him food that say, “May contain X, Y, Z” on the package, or emailing brands to see if his allergens were made on the same lines as the safe food.
My husband and I had to be the advocates for our son. If we went out to restaurants, we would either pack safe food, or have to ask the waitress to confirm with the kitchen what is egg free on the kids menu, or check the menu and make the call ahead of time, same thing with any fast food options. What oils are used, peanut? Vegetable? All the things we take for granted could potentially harm my baby.
Once we were able to figure out safe foods for Jack, we started noticing some other symptoms that indicated there could be more at play than just his allergies. He began throwing up and gagging when we would sit down to feed him or throw up randomly in his car seat. Not getting the answers I wanted from our pediatrician, I did my research and requested a referral to a pediatric gastroenterologist. I had suspected Jack had a chronic allergic/immune related condition called Eosinophilic Esophagitis, or EoE. He checked the box for all the symptoms, but again, I did not want to be the mom that was Dr. Google.
Thankfully, our doctor believed me. He said he wanted to start testing to eliminate all the things it could be before doing an upper endoscopy to confirm if it was EoE. We first met in May of 2019 and was prescribed a medication to help reflux (and if he had EoE, this would be the medication to be on for that) by October 2019, Jack had the upper endoscopy and was confirmed to have EoE. With the medication, he hasn’t had a flare up and now we have check-ups every six months.
There is a thing called the atopic triad when you talk food allergies. Allergies, Eczema, and Asthma. The next thing on our list to conquer, Jack’s skin. Starting around 13 months, Jack started having flare ups on his face. We thought it was from teething and all the drool. It would go back and forth healing, but eventually, he had solid red patches on his cheeks and chin. While he did not indicate them to be painful, I am sure they were, and he would wake up with bloody spots on his sheets from scratching at them while he was sleeping. Eventually we had a few bouts where they also appeared to be infected.
We tried literally everything we could, but keep in mind, a lot of topical creams purchased off the shelf have tree nuts (almond, etc.) in their ingredients. We were prescribed antibiotics, topical steroids, etc. We would see some improvement, but it would always flare back up. Getting nowhere with our pediatrician and urgent care visits, we finally requested to see a pediatric dermatologist in Iowa City, an hour and half away from home, at the Children’s Hospital.
After meeting with the pediatric dermatologist, we felt seen and heard. She gave us hope that he could grow out of this and we could heal his skin. Armed with a new regimen, over a few weeks we were able to see such a difference, and now seven months of this regimen, we were able to heal his face. Now we just see the eczema flare ups on his chest or legs instead of his face.
Between October and January of 2019, Jack was diagnosed with the last of the atopic triad, asthma. In November 2019 what started as a daycare cold, landed Jack in the ER for the first time. He was treated with a nebulizer, but they would not diagnose asthma since it was his first onset of symptoms. Fast forward a month and on Christmas Eve we were seeing the same symptoms with his breathing and landed back in the ER with a positive diagnosis for asthma and pneumonia. Something my husband and I know all too well. Armed with antibiotics and nebulizer treatments, Jack was slowly on the mend.
Now we are seven months out from figuring out the right treatment for his skin, getting on the right medication/inhaler for his asthma, and almost two years of putting together a safe diet for Jack. If you made it through all my long-winded story of Jack’s health history, it seems like a lot. And it is. I cannot stress how much you need to be an advocate for your child if you feel like something is not working or does not feel right. We would still be in the same situation if I had not requested referrals for his gastroenterologist or his dermatologist. It is not to say our pediatrician is not good at her job, she just does not specialize in the care we needed. It is also important to educate your friends and family.
When he was first diagnosed, I was terrified and paranoid to leave Jack with anyone who was not my husband or myself. I typed up an Action Plan for a reaction and multiple page document of safe foods and meal ideas. It took us a very long time to leave him with someone overnight. I just felt like I could not put the pressure of someone else having to administer an epi-pen and call 911 on anyone but myself or my husband if he were to have a reaction, nor did I feel like I could trust anyone else to not read the labels and feed my son. We eventually left for a week vacation to Mexico, when Jack was a year and a half, and everyone did great! I cannot tell you what it means when friends and family take his allergies into consideration when we go and visit or attend events. It means the world.
Jack is one of the most resilient kids you will ever meet. He will chat your ear off about Spider-Man, he loves Super Wings, to play outside and to read, he loves any and all fruit, pizza, cheeseburgers and will always ask for dessert (favorites in include Chewy Chocolate chip cookies (egg-free of course), fruit snacks, and marshmallows). He knows he has a lot of doctors, a skin doctor, a tummy doctor, an allergy doctor. He knows they help keep him safe and healthy. We still bribe him with gummy vitamins to do his asthma inhaler every morning and night, that he has to take his tummy medicine in an applesauce pouch every morning, and he has to put on “all the creams” before bed. As for the food, Jack is 2.5 and even with safe food, is as picky as the next toddler. So that may be a challenge until he realizes how good food is in general, can anyone else relate?? #toddlers
All our special care for Jack has now become second nature in our home and the best part is, he was tested before the global pandemic started for his yearly blood check for allergies. While his overall igE levels went up (thanks to his EoE, which elevates that number), his egg number went down. We finally got into his allergist once things started opening back up and have started the long journey of challenging egg. I have no expectations about how our next chapter will go, but there may be a light at the end of the tunnel.
I do not wish this journey on any parent, but it is manageable, and you can educate your friends and family. So now when I see those memes and complaints about kids with allergies, know that there are real people behind why places are nut-free, or why some parents feel uncomfortable leaving their children with baby-sitters, friends, or family. A little education and advocation go a long way.
Please note, I am not a doctor. I am sharing our experience and if you have any medical questions related to allergies, eczema, EOE, or asthma, please consult your doctor. If you are in a similar situation and looking for a safe outlet to talk, you can reach out to me at firstname.lastname@example.org.