Food Protein-Induced Enterocolitis Syndrome (FPIES)
FPIES (pronounced f + pies) is a rare, severe, non IgE food allergy of the digestive system, typically found in infants and toddlers. Throw out everything you know about food allergies - there are no hives or breathing issues, and an epi-pen won't help at all. It's closer to Celiacs Disease, where the cells in Matthew's digestive system can't handle the proteins in certain foods.
Proteins? Yeah...turns out that every food has protein in it, not just meat - who knew? A protein is just a group of amino acids, and Matthew's digestive system has trouble breaking certain proteins down. FPIES kids typically have trouble with dairy, soy, grains (rice, oats, barley), beef, chicken, turkey, sweet potatoes, squash, string beans, bananas, peas, lentils, and fish. Every FPIES child is different, some react to the proteins in more foods, some to less, and a few (like Matthew) react to proteins through breast milk.
So, how do we know Matthew is allergic to a food? FPIES reactions are delayed, so we don't know immediately. It can take days of eating a food before the cells in his digestive system reject it - typically it takes Matthew five days of trialing a food before he reacts, but it has taken up to fifteen days. If he's allergic he begins vomiting two hours after eating, and vomits every five minutes until there's nothing left in his tummy. He then continues to dry heave over a period of 2-3 hours, where the intervals between dry heaves gradually increase to 20 minutes apart. Matthew can't keep anything down and he becomes lethargic, laying his head on my shoulder and passing out. He can get very dehydrated and going into shock is a possibility, so we have to watch Matthew closely and try to re-hydrate him as soon as possible. For the next 24 hours he has pretty severe diarrhea, so keeping him hydrated can be a challenge.
Choosing which foods to give Matthew can be tricky - we want to have as few reactions as possible while adding as many nutritious foods to his diet as we can. We have to trial foods for two-three weeks before we can consider it "safe," so Matthew's list of safe foods grows at a snail's pace. There are a lot of setbacks and detective work with FPIES. Just one crumb of one of his allergic "trigger" foods could cause a reaction. Eating lunch at Whataburger one day caused Matthew to have a reaction through my breast milk. We have to be vigilant about what goes into either of our bodies, and it can be a struggle.
We feel so blessed to have so many friends and family who watch out for Matthew and are willing to put up with our ingredient-searching label-reading craziness! Most kids outgrow FPIES around the age of three, so there is a light at the end of the tunnel...we just have to be careful until we reach it. Obviously, this is FPIES 101 in my own words. If you want a more in-depth explanation, this is a great article to check out.
Proteins? Yeah...turns out that every food has protein in it, not just meat - who knew? A protein is just a group of amino acids, and Matthew's digestive system has trouble breaking certain proteins down. FPIES kids typically have trouble with dairy, soy, grains (rice, oats, barley), beef, chicken, turkey, sweet potatoes, squash, string beans, bananas, peas, lentils, and fish. Every FPIES child is different, some react to the proteins in more foods, some to less, and a few (like Matthew) react to proteins through breast milk.
So, how do we know Matthew is allergic to a food? FPIES reactions are delayed, so we don't know immediately. It can take days of eating a food before the cells in his digestive system reject it - typically it takes Matthew five days of trialing a food before he reacts, but it has taken up to fifteen days. If he's allergic he begins vomiting two hours after eating, and vomits every five minutes until there's nothing left in his tummy. He then continues to dry heave over a period of 2-3 hours, where the intervals between dry heaves gradually increase to 20 minutes apart. Matthew can't keep anything down and he becomes lethargic, laying his head on my shoulder and passing out. He can get very dehydrated and going into shock is a possibility, so we have to watch Matthew closely and try to re-hydrate him as soon as possible. For the next 24 hours he has pretty severe diarrhea, so keeping him hydrated can be a challenge.
Choosing which foods to give Matthew can be tricky - we want to have as few reactions as possible while adding as many nutritious foods to his diet as we can. We have to trial foods for two-three weeks before we can consider it "safe," so Matthew's list of safe foods grows at a snail's pace. There are a lot of setbacks and detective work with FPIES. Just one crumb of one of his allergic "trigger" foods could cause a reaction. Eating lunch at Whataburger one day caused Matthew to have a reaction through my breast milk. We have to be vigilant about what goes into either of our bodies, and it can be a struggle.
We feel so blessed to have so many friends and family who watch out for Matthew and are willing to put up with our ingredient-searching label-reading craziness! Most kids outgrow FPIES around the age of three, so there is a light at the end of the tunnel...we just have to be careful until we reach it. Obviously, this is FPIES 101 in my own words. If you want a more in-depth explanation, this is a great article to check out.
