So after all that I have read, there are children out there who are younger than Little M who only have a handful (I read of some with only 5 safe foods to eat) of foods to eat along with a formula to sustain them. There are children in constant pain, children who are in feeding tubes. There are adults who have gone undiagnosed who are facing the possibility of esophagus replacement.
The first step for us is to narrow down the list of allergen foods by eliminating them all and them reintroducing one at a time, followered by an endoscopy after introducing one kind of food. In such a shock after the allergy test, I started refusing little M bad foods and he went hungry for a couple of days. It was depressing.
His GI has ordered a different medicine (swallowed asthma medicine with sugar) without avoiding bad foods. I agreed. But how can one go through life being allergic to certain foods and not avoid them? It is a patch solution. While doing research there really is no way to do this without taking away the foods and giving them back one at a time.
The magnitude of this realization is immense. What will we feed this already small guy? I had a good few days and thought we can do this because what else can we do? The days later I had a breakdown. What is his life going to be like from now on? What am I going to feed him? Bad days.
Thankfully there are online communities who have families supporting each other through this life long journey. They validated my need to grieve, but said I have to be strong. Daddy is being positive for me, but sometimes it's hard. People don't understand. How can a happy active little guy be sick. He doesn't look sick. Surely all he has to do is avoid the foods he is allergic to. I wish it were that simple.
His life is going to be full of hospital visits. That alone is depressing.
I am thankful though, that he isn't like some kids with this disease that are in constant pain.