I am flooded with emotion and so thankful to the wonderful parent's who reach out to others, I am thankful for the educators and doctors who are making a difference for FPIES families.
I hardly made it through the years of discovering Jack's FPIES, I had nothing left to give back. I have not been super active in answering comments, questions and calls out for help. I apologize for that.
Jacky now is a 58 pound, pretty typical 7 year old and although he still has not passed soy, wheat, modified food starch, or barley, he is happier now than he has been in over 5 years.
More than Jack's food restrictions, his emotional issues have upset his life. He struggles with food issues, medical trauma and other issues with authority figures. I wish that when Jack was going thru all of the physical struggles, that I would have been able to protect him better to be sure that he was treated gently and I would've been sure to get a therapist involved, from the beginning.
When I realized that his behavior may be a reflection of his trauma, I started dealing with it in other ways and he is really coming around. I say things to him like, "man, when you were little, people strapped you down and put needles in your arms, feet and head. They put tubes up your nose and down your throat. They did so many things to you. It must have felt awful, but they were doing what they knew how to do, in order to save you."
Since we've started saying things like this to him, he seems to be happier and more calm.
Here Jack is now...