A recent conversation I had, has me thinking. Do I consider Scotty to be FPIES-FREE? Is he healed yet? Can I stop reading every labels for him? Do I really let him eat everything out there in the big wide world? Soy is our final trigger. Has he outgrown it?
Yes and No.
Knowing our GI doctor, she will not ever scope him to check the condition of his intestines (which I imagine to be quite healthy now!). All these decisions are based purely on close observation of how he feels [energy, appetite, coloring, fatigue, pain], and of course daily poop evaluations.
We have told Scotty, "You may eat anything! Everything!" He proudly recites this to his brothers. We did this to free his little mind, which will hopefully begin to have a desire to try new things. New things means: broccoli, corn on the cob, mashed potatoes, maybe beef, salmon, beans, spaghetti sauce. I can imagine a day, far in the future, when he will want to try these things after we programed his mind to say "NO" to all new food for 4 years.
All this being said, I only by soy-free snacks and crackers. He takes his own snack to school daily. He never eats snacks at a friend's house unless that mom calls me double checking if it is safe [which they all do!]. Teachers at church bring non-food prizes. I buy soy-free bread. I make all cakes, pancakes, cookies, waffles from scratch so that I know what is in them. I still read every label searching for soy.
As we approach his 5th birthday this spring, I am thinking hard about our plan for him these next 6 months. Sometimes he eats foods these days with soy-lecithin as an experiment to see where we are. Sometimes he can eat soy-lecithin without any side effects [loves those McDonald's fries! his favorite junkfood treat]. Sometimes random products containing soy make him sick. Perhaps an invisible threshold. Some days he is sick without any apparent cause that I can find. These are things our Dr. has prepared me for, as we move forward.
Loosening the reigns is a bit scary, but also thrilling. I think we have almost made it to the end after years very hard work in behalf of his health. It has paid off! This is my biggest success as a mom. ...now onto the next FPIES baby in the family, and getting him to the end.
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