My daughter who is now 4 has not been officially diagnosed with FPIES but her GI doc thinks it is a possibility but the first Allergist we went to was very cavalier about just reintroducing all the foods and see how it goes......That sounded terrifying. I didn't feel like this allergist listened to me or my concerns and she said she didn't think that my daughter had FPIES because she would have grown out of the triggers by now. However my daughter still vomits not like she used to but at least 1-2 times a week. I am unsure if we have all the food out of her diet that trigger her but she atleast is not vomiting as much as she was and we can stop the vomiting before she is severely dehydrated. However she seems to have texture issues as well. Yesterday she threw up because she had a hard time chewing with too much banana in her mouth, she can't handle seeing her brother eat yogurt, she can't handle cooked kale, avocado, feeling banana bread dough before it is cooked, or seeing it drip off a spatula or something, she can't handle seeing honey squeezed onto a spoon and so on... Do other kids deal with this? Some of her vomiting is because she has textural sensitivities and other seems to be related to foods. I have felt very overwhelmed with her since she was days old, I am discouraged at the lack of diagnosis and guessing and that there is no clear treatment plan because there is not definite diagnosis. Anyone else dealing with this?
Idk why I have not seen this before, but if your daughter is still having issues, it may be worth looking into a child psychologist, especially one who knows about FPIES or at least deals w/ severe allergies.
Through meeting with one at Hasbro, we were able to figure out how we were going to frame conversations about food, negative reactions, and others having food that our sons could not have.