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Life After Food Allergies

Your entire family comes to a halt when your son is diagnosed with food allergies. It’s hard on your son. Hard on you and your husband. Hard on your older son. You micromanage meals. You read every single ingredient on packages. You hesitate before parties. Who is bringing what? “Don’t feed him anything without asking me first.” You want to vomit when you send him off to school, alone. Your new normal causes a cosmic shift at home. You settle into the uncomfortable new normal. The allergy years rage on.

The day comes, the moment you dreamed about. Oral Food Challenge Day. You don’t sleep the night before, tossing, turning, worrying. Certain he will react. Heart races. Sweat oozes. Vomit feeling returns.

You sit in the hospital while hours inch by. You talk to doctors and nurses. You smile. Its fake. A thin façade one wrong tap away from crumbling. Mamas wear this veil often.

You restrain your hysterical son as they put the IV in. He bites you. He hits you. He yells “NO MOMMY, DON’T DO THIS!” The child psychologist they brought in to “keep him calm and talk him through this” is useless, slumped against the wall. You wonder how much it cost you to pay for her slump. You cling to your brave facade. You watch every second of the procedure, needle piercing that perfect skin you love to kiss so much.

When you walk out of Lurie Children’s Hospital, you are in a state of shock. He passed. He is done. You are done. Your family is done! It doesn’t feel real. Dreamlike trip down the hospital elevator. It was a long stressful day. You tried explaining to a three year old why he had to eat the food you swore makes him sick. He doesn’t understand any of this. You had to train him to be his own advocate. The cost of safety frightened him, maybe forever.

You buy the offenders. Banana. Avocado. Kiwi. Bring them home. House is stocked with forbidden foods. Old forbidden foods. He won’t eat even one bite of banana. Still insisting it makes him sick, that he doesn’t like that, that he hates them.

You offer to make banana cookies. Let’s make this fun! He helps. He smiles. Big brother helps, he is very excited, bananas are his favorite. You bake the cookies. Let them cool. Hand him one cookie. He takes a nibble, yuck! “They are gross mama,” he says.

You sigh, and let it go. Big brother likes the cookies. You like them even more and end up eating most of them. They taste like banana bread. You offer banana with breakfast. “No.” Banana with lunch? “No.” You let it go for a day, a week, “banana?” “No! Bananas make me sick, mama.” You smile. “Not anymore sweetheart, but we can try again later.”

You peel a banana. You don’t scrub your hands and handle his food at the same time. You wipe your hands on a towel, not panicking that he might have a reaction. You feel free. The burden of reactions no longer dragging you into the abyss.

You bring avocado back to Taco Tuesday. The whole family likes this. You never really stressed the avocado allergy, because toddlers and babies don’t have much time to get their hands on one of those. He tries that. “Too spicy” Normal three year old reaction. You feel a wave of relief.

You go to the closet to grab something. Your eyes linger on the epi-pens. “I should toss those.” You don’t You close the door. Turn off the light. Walk away. Maybe later.

You sneak a banana into your smoothie. He loves your smoothies. He drinks that. He doesn’t know. You feel sneaky but victorious.

School tells you they had banana with lunch. He wouldn’t eat it. “I no eat the banana mama.” “It’s ok. Maybe when you’re six!” “Yeah when I’m six!”

You thought the other side of food allergies meant life going back to the first normal. You were wrong. It laid way for another new normal. You slipped on a new worry: that you caused permanent damage.

You look in the mirror, shake your head. You fought for him. You took the punches and bites. You cleaned up the vomit. You rushed him to the ER. You demanded answers from doctors. You made lists. You made documents. You had a medical binder. You HAD to teach him to be safe. It was life or death after all. You are strong. The other side of food allergies is your next journey. He outgrew the offenders. He will outgrow the fear.

Last Thursday we received a final diagnosis for some issues our little guy has been having his entire life. Long story short he has Food-Protein Induced Enterocolitis Syndrome or F-PIES. In simple terms it is a food allergy affecting the GI tract. You can check out that link for a ton more information. He also has a blood test coming up next week to check for a ton of other food allergies. We will have some more information on those in the next coming weeks.

I have known something was off with him since he was born. He has always been a puker. He had a hard time gaining weight. Once we started introducing solid foods and eventually dairy milk (he seems to be lactose intolerant on top of F-PIES), his vomiting and diarrhea continued. The offending foods so far have been bananas and avocados. If he eats them, it never fails, a couple hours later is his vomiting profusely. One time he got so dehydrated and in distress that I rushed him to the ER.

From what I have been reading over the last 5 days, my breastmilk likely was not helping him. I say this because I live to eat bananas. Or at least I did. They are dead to me now. But I would freeze plates of them and eat them like chips. I would eat them in my smoothies Every day that baby was being exposed to something that made him ill. I had no idea.

I did bring this up on multiple occasions. I showed up to doctor’s appointments with a list of symptoms and incidents. Before he was on solids, because he was still happy and not seemingly in pain after throwing up it was dismissed as reflux. However, not a serious reflux so he never needed medication. He would just outgrow it. I was referred to some allergists by our pediatrician after the multiple fruit incidents. We researched them and picked one. When I called, they refused to see him because he was under 1. Since we wanted to see her and everyone else said they really didn’t think it was an allergy because he was only throwing up etc, we waited. I feel awful.

When we did finally see her, we hated her. The whole experience was miserable. I won’t go into individual details, but it was a bad time for all four of us. Then she had no idea about FPIES but thought it could sound like that. She left the room and literally Googled it. She printed what she found and gave it to us. Promising to call us back that week. She didn’t call back until a week later. We went home and found the exact information she gave us on our very first Google search. We were not happy. I called my pediatrician and explained the potential diagnosis. It then clicked with her that she has a couple patients with that and has another allergist who works with them.

I saw him last week. He was amazing. He is very versed in F-PIES. He went through the whole process with me. We scheduled the blood tests. He prescribed EPI Pens, that I now have to carry at all times. He needs them in case he gets to the point of dehydration he got to before the one ER visit. It won’t stop the allergic reaction, but it will bring his blood pressure back up and prevent a more serious situation that comes from that kind of distress on the body. We were given a letter to give to the paramedics and ER so they understand what this rare syndrome is. As we have learned, many doctors are not familiar with it at all.

The last five days have been incredibly reflective for me. I will literally never forgive myself for not figuring this out earlier. I will never forgive myself for eating the very food that makes him so ill and then continue to breastfeed. I will never forgive myself for his struggle to grow during his first year. I feel just terrible. I feel terrible that I didn’t demand more answers. I feel awful that I just accepted the fact that this one allergist didn’t see babies under 1. Why didn’t I pursue another allergist who WOULD see him? Why did I want to see her so badly based on silly online reviews? Why did I just accept his throwing up as reflux? Why didn’t I Google more and more and more? I get a lot of comments for how much I Google symptoms. I always hear that I shouldn’t freak out because of what I had found on Google. What if I had searched a few more terms and come across F-PIES when he was 6 months old? What if? What if? What if? Mom guilt, it is for real. I have never quite experienced it like I have in the last 5 days. I have felt guilty over other things, especially with balancing two kids. They are both playing around me as I type this. Jackson trying to show me some monster truck tricks and Alexander is raiding the pantry. I have fed, played with, read to, and bathed them already today. It is not even 10, so a few minutes to get this off my chest is not a big deal, yet I still feel kind of guilty. But nothing about how I feel over the first entire year of my sweet baby boy’s life. Maybe the next 5 days will be easier….