I have talked to a few other parents of children with FPIES & all seem to have the same concern that there are family members/close friends who "just don't get it." Can anyone share things that they did to help family members/friends understand better what they are going through.
And...what have you done with the relationships of those who persistently say things that hurt you or do things that could expose your child to unsafe foods (ie. distanced yourselves, set up "rules" for visits, etc).
Looking for some ideas on how to approach family & get them to understand how serious this disorder really can be & that eating such a limited diet is not a choice.
Also wondering if anyone has any suggestions for family gatherings & how to navigate that since there is almost always food around that is dangerous. It is no fun for our child (who wants what everyone else is having) or us (because we have to watch like a hawks to make sure someone or their children don't give it the them).