Threshold

Threshold.  I have been mulling this over for some time now. Many FPIES kids seem to have a limit to how much of a given trigger they can have before a reaction takes place. Carter is this way with soy. He had a chronic cold for months last year. He had a constant runny nose and an awful mucousy cough that seemed to be nonstop. At first I thought it was allergies. I even called the pediatrician to ask about giving him allergy medicine. He wasn’t even a year old yet. I was told that it was very unlikely that he had developed a seasonal allergy since this was his first exposure to the allergens. His breathing got worse. He was diagnosed with croup twice. Nothing we did helped. He was getting worse. I seemed to be spending more and more nights rocking him and holding him upright, asleep on my chest, just so he could breathe.  Then one night when Carter was 8 months old, things got even worse.  Carter was crying, moaning and whimpering in his bed. I went in, picked him up and sat down in the rocking chair to soothe his discomfort. I noticed that his breathing wasn’t normal. I turned the light on and looked at my little boy. His eyes were half open and he was struggling to breathe. It seemed to take all his energy just to take one little breath. I watched his little chest rise and fall and then counted the seconds before he started breathing again. I looked for obvious signs of lack of oxygen. His lips weren’t blue or purple, but he just wasn’t breathing right. The last time I saw him like this, he was only hours old. He struggled to breathe when he was born and was put under and oxygen hood until his breathing was regulated. I was just as scared then as I was now. I would call 911, I told myself, if his condition got any worse. I held him the rest of the night, just willing him to breathe.

We took him to the doctor the next morning and he diagnosed him with RSV and prescribed inhalers and antibiotics. Looking back on it now, through FPIES eyes, I believe he was having an FPIES reaction. Although he never vomited, he was lethargic and unresponsive. It was like he skipped the vomiting and went straight to shock. His breathing and overall condition was much better by the next morning. 

During this chronic cold, Carter had recently stated eating finger foods; crackers, puffs and teething biscuits. These all contained some amount of soy, usually soy oil or lecithin. Once I removed all foods containing soy, ALL of his cold issues went away.

That was 7 months ago. But the chronic cold has returned. We have had over 2 months of runny nose, cough, face rubbing and spikes o f irritability. At first I blamed it on teething. Then on a cold his brothers had, which was the first one Carter ever caught. But now I have no “normal” things to blame it on. Everyone else is healthy. Carter is the only one suffering from this “cold”. The last time we had these symptoms, it was from food. Could that be the cause this time? Where was he getting soy exposure? We haven’t had anything new. And then it hit me . . . Chicken and Eggs. Chickens are fed a high soy based diet. Could the trace amounts left in the poultry be the cause of all this? I believe so. I have pulled both foods from his diet. And now we wait and hope for the symptoms to clear. If they do, I will seek out grass fed poultry and trial them and Carter will play guinea pig once again.

So what does all this have to do with Threshold? Carter’s formulas have always had small amounts of soy oil in them. I do not think his body can handle even a trace amount more than what his formula contains. In fact, I don’t think he will ever be truly at “baseline” until he no longer needs the formula. So any exposure to soy, even in trace amounts, starts a build up reaction. It puts his body at war with the soy. If this build up lasts long enough, it will push his body too far, causing it to shut down like we saw last February.  I keep going back to the few months we had after our FPIES diagnosis when Carter was only on 2 foods and was thriving. He was the happiest I have ever seen him in his 18 months. I am sure it was the first time in his life that he wasn’t in constant pain.

Now I go back to the pantry and the cookbooks. I remove all the foods and recipes containing eggs and chicken. I find other uses for the ground chicken in the freezer. I look for ways to use one of his safe foods as an egg substitute so he can still have waffles with his brothers. I hope this is the answer. I hope that I can reintroduce safe eggs and chicken into his diet. And then I wonder, is it worth it?