FPIES is not a disease. It's a form of food allergy but it's a delayed hypersensitivity. They don't react for at least 2 hours after eating the trigger food.
The reaction comes out of nowhere. Beth will literally be running and laughing and then heaving her little guts out. The vomiting is extremely strong. She empties her stomach entirely for 2 hours at least. By the end it's stomach fluid and it burns her mouth and lips so she gets sores.
The risk is dehydration and shock. Beth is usually very weak and often falls asleep during the ordeal. So we hold her while she sleeps and then she wakes up, heaves, cries, and falls back asleep right away. When she's done she just sleeps it off. She usually has about 2-3 days of diarrhea after that and a very small appetite.
The good news is that almost all FPIES babies outgrow it by 5. Most start outgrowing intolerances by 3. Unfortunately, they don't outgrow it all at once. She'll outgrow rice at one point and wheat at another so we have to test her over and over to see if each food is safe.
My hope is that by the time she's in school I won't have to come guard her from over generous children who want to share their food.
The biggest frustration I deal with is people not having a clue what's in their food. If I say no grains, they still think rice is fine and corn is fine or 'here beth, have a cookie'.
Jon and I decided after her last reaction that nobody was allowed to feed her except us (meaning others can give her food but only if it's food we provided). It's hard, because people really want to make food for her, but we just can't risk it. Nobody else is as motivated as we are to protect her.
No comments:
Post a Comment