We posted this query on our social media page (anonymously)- a mom had some insights to share but couldn't get logged in here and has asked us to share her response:
First of all I am so sorry that you are going through this. FPIES is terrible. My son (now 4 years old) was with one safe food and full time nursing still at a year. I will promise you it does get better though.
We failed all the typical baby foods but rice, bananas, oats and dairy, egg were by FAR our worst. They sent him into shock and it was terrifying.
BUT there is light at the end of the tunnel. When we tried quinoa (which is not a grain it is actually a pseudo grain... a seed...) his little life was changed!!! He passed it with flying colors and eats it still to this day multiple times a day! And it is a complete protein so it is a great food to have! And then he passed almond butter, another life saver. We were not able to get fruits and veggies for a while but he is doing much much better.
In the guidelines there is a chart of typically safe foods and ones that are high risk, if you haven’t looked through that for sure print it off. Also please join in the fb group
FPIES (food protein induced Enterocolitis syndrome) support.
It has been an INVALUABLE tool and lifeline for me. There are so many people ready and willing to help who have lived through it and are really hoping for the best for you and they get it. Please join and ask as many questions as you need.
I really just want to encourage you to not panic and know it DOES get better. And we are here to help you learn from what we have done. Hugs to you mama.
