FPIES

This post has been a long time coming. Every time I sit down to write I can't seem to find the words. They get jumbled in my head and the only thing that comes to mind is one word. STRESSED. I'm stressed. It is no surprise, since i'm convinced that FPIES and STRESS are synonymous. You can not have FPIES in your life and not feel completely overwhelmed, lost, annoyed, anxious, impatient, lonely, tired...stressed. The minute you think you've finally gotten in front of the chaos, you find yourself back at the beginning (we call it baseline). Daily you are trying to grasp on to some bit of hope that someday this will all be behind you. It is like trying to swim with 100 lb blocks tied to both of your legs and all you want is someone to cut the ropes and free you from the weight. It is beyond stressful, it's completely and utterly exhausting.

So what is FPIES? What is this thing that completely weighs you down? In short, it is the food allergy of all food allergies. There is no rhyme or reason to it. There is no test, no treatment, no way to say what exactly will cause a reaction and how bad it will be. It is just pure chaos in the form of food allergies. FPIES is also known as Food Protein Induced Enterocolitis Syndrome. Basically, anything that has protein could be a possible trigger. 

It is a lot to take in, I know. Hopefully this post will help you understand exactly what FPIES is and how to recognize the symptoms. 

1. FPIES is a gut related allergy. It isn't your typical IgE allergy. Although some FPIES kids experience both IgE and FPIES reactions. 

2. There is no way to test which foods will be triggers. Your standard skin prick and blood work will not show FPIES reactions. 

3. Symptoms of an FPIES reaction typically occurs 2-3 hours after ingesting the trigger food. 

3. It is RARE, and I mean really rare. Many doctors and health professionals have never even heard of it, let alone know how to test and treat it. 

4. FPIES kids can react to proteins found in breast milk and formula. Many kids have to be put on a special elemental formula, while others with more "severe" cases may need feeding tubes. 

5. The only way to find trigger foods is by trial and error. This is horrifying for parents and family members. Can you imagine giving your child something ON PURPOSE, knowing it could potentially be poisonous to their little bodies? Horrifying. 

6. FPIES reactions come in two forms: ACUTE and CHRONIC. Acute reactions are characterized by repeatedly vomiting 2-3 hours after ingestion. This can lead to shock and dehydration if not monitored. Chronic is the "tricky" reaction. It can be any number of symptoms...such as diarrhea, constipation, stomach pain, mood swings (and i'm talking exorcist type mood swings), not sleeping, lethargy, mucous in stools and sometimes even blood in stools. I'm not sure which is worse...

7. Once safe, doesn't mean always safe. Unfortunately, kids lose safe foods more often than we would like to admit. One day they could be fine with blueberries, the next it could make them violently ill. 

8. Most kids outgrow FPIES. HALLELUJAH! Ah, there is light at the end of the tunnel. At least, that is what we are all praying for. It is that little ray of hope that keeps us plugging along. That this horrifyingly stressful world of FPIES, is not forever. 

To learn more about FPIES check out the FPIES Foundation.

To read about our story and our road to FPIES click here.