An empty plate. That’s all I could think about as I read Jamie’s story. Her child has FPIES, a condition that must affect every moment of every day in her family’s life, never knowing what might set it off. I thought that I would have a fear every time I set a plate of food in front of my daughter. To think that I was terrified at the thought of one of my children being allergic to peanuts, because we live on peanut butter in this house! What is it like to live that reality, only worse?
What would it be like if your child had FPIES?
Have you ever thought about what it might be like to have a kid with severe allergies? Have you ever noticed a stranger hovering over their child at a park when somebody hands their own kid a snack, that they will probably get all over the equipment, and think the parent “freaking out” needs to ease up? Have you ever been frustrated that you can’t send in treats to your child’s classroom on their birthday, because you know your mom did when you were little?
Here is another installment of my Living With series. Let’s take a look inside, and gain some more understanding, of what it’s like for a daily struggle going on behind someone else’s closed doors.
Living With – A Child With FPIES
I’m raising a 4 year old with severe Food Protein-Induced Enterocolitis Syndrome (FPIES). This is a rare food allergy condition. It’s a non-IgE, cell mediated allergy that causes two categories of symptoms: acute and chronic. Acute reactions cause vomiting several hours after ingestion, which 20% of the time results in shock. In our case even a trace amount of cross contamination from causes vomit and shock starting exactly 4 hours after eating it. Fortunately Zofran is effective at preventing the shock, but without it the reaction is life threatening. Chronic reactions are delayed by hours to days and cause a variety of symptoms which can vary from one individual to the next, and the definition is still debated. But we have seen: abdominal pain, diarrhea, bleeding rash on the bottom, malabsorption, weight loss, developmental regression, hypoglycemia, and acidosis. These symptoms can be mild, or severe enough to require hospitalization for IV nutrition.
We have a few close friends and family who understand the all consuming difficulties of living with FPIES. But most people have a hard time wrapping their head around how a food allergy can affect so many things. One of the biggest challenges we face is that even highly refined soy oil causes a reaction, and it is in widespread use. Additionally, due to the delay in symptoms showing up, we are dealing with one or more unknown food triggers. So we have to avoid everything that has not been proven safe, and it’s a lengthy process to complete a food trial and identity a food as a safe or fail/trigger.
Food ingredients hide in a surprising number of places. Markers, paint, glue, playdough and most art and craft either contain known triggers, or unknown ingredients. Toiletries are either made from scratch or specially sourced online. The same for household cleaners. Even polyester fabric can be made from up to 30% soy oil (with the remaining 70% being petroleum oil). The FDA only requires allergen labeling for food, and even then, only the 8 most common allergens. Soy is one of the 8, but soy oil, and any derivatives are exempted from allergen labeling. In theory the oil contains no protein and should be safe for soy allergies, but that statement is based on typical IgE allergies, and even then some people are sensitive. It can be very hard to determine if something contains a trigger if it’s not one of the top 8. Companies often have no idea what the source of their ingredients is, or they refuse to release the information, since they consider it proprietary. So there are dozens of ingredients that are commonly made from soy oil which we have to avoid unless the company can provide us a conclusive statement of the source. If you have any kind of soap, lotion, hand sanitizer, or cleaner near you right now, there is a high chance it contains soy. Some of the most common soy derived ingredients are: glycerin, polysorbate 80, polyethylene glycol, and citric acid (also sometimes corn).
In our home we have had to make significant changes. We have replaced all the carpet with cork floor and cotton area rugs, because synthetic and wool carpet were both problems. Laundry detergent and dishwasher powder are both made from scratch. Hand soap is a special olive oil soap ordered online, and we don’t use any lotion. For dry hands we use pure organic shea butter or jojoba oil. Food is restricted to only the dining room and kitchen. Buying food involves 5 different grocery stores, Amazon, a camel dairy, and up to 3 food co-ops every month. Due to extreme sensitivity even changing brands for a known safe food requires a trial. For example, one brand of frozen organic blueberries is safe, but another brand causes chronic symptoms. We suspect due to cross contamination with cherries. So we stick with what works, and stockpile. It’s a lot of work to keep track of how much we have on hand for each food, and coordinate what gets restocked from where.
In short, FPIES has totally altered our lives, home, and daily routines. It makes socializing difficult, since most events revolve around food.
Can you imagine? Or are you living it? I can’t help but be amazed at the strength it must take to live this every day. I would fear the thing that is supposed to nourish my child, along with anything else they come into contact with. I am not claiming to know all (most of the time 😉 ), but I will admit that FPIES was new to me. Jamie has become quite knowledgeable about her daughter’s condition – that’s what moms do. I asked her if there were any links she would like to share. I encourage you to check these out.
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