Our Journey with FPIES

This May 4th is the second annual National FPIES Awareness Day. I have previously written about Brook's full story here, but it has been over a year and a half since that post. For families of children with FPIES, a year and a half is a very long time. Living as an FPIES family is not easy, and one of the most challenging aspects is the lack of knowledge about this rare condition with no cure. I would strongly encourage people to share our story, as what we are going through may be similar to what someone else in your life is also going through, most likely undiagnosed. Help shine some light on the difficulties of diagnosis, management and daily life for families of FPIES children. I welcome you to share our story.  

To recap Brook's full story briefly, our 3 year old daughter suffers from a very rare, and very serious disease called Food Protein Induced Enterocolitis Syndrome (more commonly called FPIES for short... pronounced F-pies like apple pie). Less than .04% of children are diagnosed with this condition which falls into the "food allergy" classification. Basically, Brook suffers from a gastrointestinal allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In reality, it's much more complicated than that. FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods will trigger a reaction, is to give her each food on a special trial schedule, and watch and wait to see if she will get sick. Some families do this at a specialists office, but most are doing this on their own at home for every. single. new. food. they introduce to their child.

Because FPIES symptoms are different than regular food allergies, it is in that odd gray area for food allergy families. We don't use epinephrine (epipen) like other food allergy children (think of the classic peanut allergy child who swells up and can't breath). Those allergies are called "IgE allergies," where Immunoglobulin E reacts to foods in the blood. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. There is no cure for this disorder.

The symptoms fall into two categories: acute symptoms, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." Chronic symptoms include poor sleeping habits (not just your regular 2-4 wake ups a night, but for us 10+ times each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. Many of these symptoms are easily overlooked. We didn't notice for months that something was wrong, even when Brook was reacting to her trigger foods through my breast milk.

FPIES sucks. There are a lot of additional demands it places on families, that take a significant toll on us emotionally, physically, and financially. Beyond the constant cooking everything from scratch, and spending significantly more money on fresh produce and groceries for specialty items, FPIES requires a lot of attention to detail and a constant vigilance. Products change, ingredients are changed for cost effectiveness all the time. Cross contamination is always an issue. In addition, FPIES takes some of the joy out of birthday parties, family holiday gatherings, get together events with friends and family, play dates, and really, any interaction where our children come in contact with other people. Imagine not being able to make a birthday cake for your child's birthday, or not being able to feed your child turkey on Thanksgiving. Allergic to corn, food coloring, or milk? Halloween just got a bit harder. Food is a major part of American holiday tradition, and FPIES makes it that much harder to celebrate. FPIES turns us into helicopter moms and dads (out of necessity). Toddlers will put anything into their mouth, and an innocent play date where my child picks up a stray rice puff off your unvacuumed carpet could mean hours of vomiting, a trip to the ER, and two weeks worth of painful bloody-mucousy diapers as a result. FPIES can make parents afraid of medical professionals who don't know or understand FPIES, who lob claims of Munchhausen syndrome, who call CPS and say that we're "starving" our children, who attempt to push protocols and treatments that put our children's lives at risk, or who don't take us seriously time and time again, because they think a medical degree means they know our child better than we do. Worse, are the stories we hear of FPIES ripping families apart from the overwhelming stress and financial burdens of being in and out of specialists and hospitals. Divorce is hard enough for families, but no one ever imagines the stress of dealing with a chronic medical condition with no cure could lead to the break up of a family. Yes, FPIES sucks.

FPIES makes us obsessed with what our children eat and their poop. Poop holds all the answers.... is she reacting? Check the poop. Should we pull the pineapple from her diet? Does the poop look "off?" What did we feed her today, was there anything new or different that she came into contact with? This poop is lime green and looks like someone blew their nose in it. Did someone accidentally give her something to eat at daycare? It looks like her poop is filled with spider webs. This diaper has blood in it... These are all real things we have said more than one time.

But for all the insanity, stress, and lack of support/information, our FPIES journey has been improving. We finally got a diagnostic code for FPIES in October of 2015. This is a huge deal when your child has a rare medical condition that most doctors haven't even heard of. It allows them to see that yes, it is a real thing, and that they can pull up information about it when you show up to the ER or urgent care. It improves our access to more knowledgeable care, and prevents mistakes from new healthcare providers when we see new doctors at the same clinic or hospital she has previously been treated at. 

In addition, it appears that we are one of the lucky ones. They say that about 40-60% (depending on the source) of children with FPIES will start to outgrow some of their food allergies between their 3rd and 6th birthdays. Brook has outgrown her allergies to carrageenan, turkey, oranges, and is showing signs of tolerating food dye. Of course, this still leaves us with FPIES reactions to rice, coconut, cows milk, salmon, shrimp/shellfish, venison, watermelon, and potentially pineapple (we're trialing this one right now and having some minor issues). Our doctors don't know if she will outgrow her reactions to all of her trigger foods, but we have hope that as she gets older, we will start to feel what it's like to be like every other family.... to be able to just grab food on the go without having to pack food everywhere we go; to not have to worry about sending her on a sleep over; to not have to scrutinize every ingredient in every item she eats. 

There are hundreds of blogs and stories from families trudging down the FPIES journey. Some are more horrifying than others, some will make you cry, some will make you laugh. One thing they all have in common? We want people to know what we are all going through, to understand and be empathetic to the challenges we face. We want your support in helping FPIES children and their families have their stories heard.