food allergies

Our Food Allergy Story Part 2

Whew. I haven’t even started Part 2 and I’m already exhausted. I’ll try to keep this brief but also want to provide helpful details. (Catch up on Part 1 if you need to.) Here we go…..

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Here we are! 2 under 2. I used the hashtag #2under2 in every photo. I was proud of myself for battling 2 under 2 and displaying our walking shit show on a regular basis. I won’t mention how much of a B I was during that time. To make sure my second born doesn’t feel less than, his name is Oskar and he was born on May 9, 2015. Bodie was 18 months old when Oskar was born. Bodie was 10 months when I stopped nursing him and did just fine with soy formula. By the time Oskar was born I had the food allergy situation HANDLED. We avoided dairy, egg, peanuts and tree nuts. Was it easy? Hell no. Did we manage? Hell yes.

BUT there was still an issue. A persistent cough and throw up issue. About every week or every few weeks Bodie was throwing up. Sometimes it was from coughing and other times we had no idea why. We couldn’t pin point it to a food. Our current allergist wasn’t alarmed by it but I was. If Bodie had a cold he spent 24-48 hours coughing constantly. CONSTANTLY. Every 5-10 seconds. Until he threw up. I found another allergist and she diagnosed with him cough variant asthma. She said she doesn’t usually diagnose kids this young with it but she was confident this was it. We were prescribed two medications. A daily inhaler – pomicort and an action plan for albuterol when the first symptom of a cold started.

At this point in our shit show, we were at the stage where we were constantly sick. Bodie was attending a mother’s day out program and Oskar was going a few times a month. We spent two years building all of our immune systems with virus after virus after virus. Every time Bodie got a cold, we immediately started giving albuterol every 4 hours. He still coughed. He still coughed until he threw up. We called the doctor, she sent us to the ER. The ER couldn’t do anything. The doc then prescribed Prednisone and that helped a little bit. But didn’t solve the issue.  We would go in to see her and every time she asked me if I was following the protocol. I said yes, she questioned me again almost accusing me of not following it. It was a vicious cycle that we repeated for almost a year and a half.  After 7 ER visits, entirely too much prednisone, I said enough and we found a new allergist.

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This allergist took one look at Bodie’s records, listened to me, really listened to me and said it was not cough variant asthma. He suspected acid reflux and possibly Eosinophilic Esophagitis (EOE). He prescribed medication for the acid reflux and told us to eliminate wheat from Bodie’s diet. If that doesn’t work then he probably needs an endoscopy to see what’s going on in his esophagus.  The medication and new diet provided some improvement but not enough.

We had heard good things about Cardinal Glennon hospital and met with a GI specialist there. She recommended an endoscopy and also referred us to a lung doctor to make sure we were covering all the bases. In March of 2018 Bodie had an endoscopy and a bronchoscopy. The broncoscopy showed that were no issues with his lungs. All was in working order. The endoscopy showed EOE. The stomach doctor then referred us to an allergist at Cardinal Glennon. Once again we switched allergists.

Our current allergists gave us two options to treat his EOE, take an oral steroid or eliminate soy. I decided on the steroid. After a week of medication came behavior and sleep changes. I looked at this diet to see just how much soy he was consuming. Turns out he wasn’t consuming much at all, in fact only one thing had it that he was eating. I called the allergist and said we were taking the harder road and eliminating soy. Why was this the harder road, even though he wasn’t eating much? Well the one thing he was eating that had soy was bread. I tried numerous recipes for bread and they all failed. Finally, after a few posts on instagram, someone finally told me about a brand of bread that is safe. HALLELUJAH!! We have bread!

Four months later, in July of 2018 Bodie had a repeat Endoscopy to see if the new diet helped and it did. The GI doctor was extremely pleased and almost in disbelief with how great the results were. So now we maintain this diet and make sure we have no allergic reactions to food. In 2019 we may run some blood tests to see if his dairy and egg allergy are low enough to do a food challenge. Unfortunately, with the EOE he has to repeat an endoscopy before we can even do that to make sure all is good there before proceeding with a challenge. Then if he passes a food challenge, we have to repeat another endoscopy months later to make sure the allergen isn’t flaring up his EOE.

It’s a hard road. It’s almost a double edge sword. There’s a good chance he has outgrown the dairy allergy but dairy is one of the main causes of EOE. For now the goal is to keep him out of the hospital for a while, out of the procedure room and just keep going with our current diet. I would be lying if I said 5 procedures in one year hasn’t affected him. It would affect anybody. It’s frustrating, maddening and requires so much patience. On top of that we took away more food. In another post I’ll discuss how Bodie dealt with removing wheat and soy in his diet.

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