My 4 year old and I both have a disease called Eosinophilic Esophagitis. When we eat food that we are allergic to, the white blood cells in our esophagus attack the tissue in our esophagus. This can swell our esophagus, it hurts, food gets stuck, I choke. If my 4 year old accidentally eats milk, he will throw up for 24 hours. That has happened 5 times. We have gotten better about not letting him accidentally eat something containing milk. Since part of not being sick for my son includes not eating a lot of specific foods, he has a feeding tube that he gets most of his nutrition from in the form of an amino acid formula. They break down food so that there are no proteins that would make him sick. It tastes nasty. Getting the special formula in him is only going to happen via a feeding tube.
This video was made from the local support group. Please take a few minutes to watch it. What I wish people knew about EE is that it isn’t fun.The hardest part is feeling not normal. When a teacher sends home a request for you to not send in specific foods, please know that there is a child who didn’t ask for their food allergy. The child doesn’t want to be left out. Don’t punish the kid by going against the request because you think it is annoying.
While I think this EE monster is annoying and painful and uncomfortable etc, I feel fortunate to have my son. I know there are many things that are much more severe or difficult to deal with. I am thankful that my son ONLY has EE.
You can read more about my EE story from last year.