Punky's symptoms of FPIES weren't discovered until the first time we fed her rice cereal, at six months. She was already a healthy, off-the-charts baby by that time because the only thing she had ever been fed was breast milk. If we had begun feeding her formula based on milk or soy (two of the most common FPIES triggers), there's a chance she would have failed to thrive until a diagnosis was made.
I'm not going to debate whether breastfeeding is better than formula feeding. Of course I believe breastfeeding is best, but I don't think it's necessary to criminalize the mothers that can't or don't breastfeed. I just know that for our family it saved us money and a plethora of health problems.
Now that Punky is over a year old, and still has a very limited diet, her doctors have concluded that it's time to start using a supplemental formula so she gets more protein and other nutrients. I am involved in a Facebook Group of other FPIES parents, so I have heard all kinds of stories, good and bad, about elemental formulas; formulas that have the milk or soy proteins broken down in a way that they are more digestible for people with gastrointestinal issues. They are notoriously bad-tasting and so expensive that it's almost prohibitive to buy them unless covered by insurance. Yet, they are a lifeline for so many young children who can tolerate nothing else.
Did I mention yet how fortunate we are? Since Punky is still nursing and also eating an established diet that includes a few fruits and grains, we probably only need to give her one serving of formula per day. It takes the place of the cows milk she would be drinking if she were a toddler with a normal diet.
I got samples of two different things for Punky to try. The first one is Neocate EO28 Splash. It comes in three different fruity flavors and is packaged in a juice box with a straw. We can order it off the website and it comes in a case of 27 boxes for $115 ($4.26/box). The other formula is Elecare Jr., which is a powder to be mixed with water. It comes in unflavored and vanilla. If I'm reading the back of the can correctly, one can should have between 8-10 servings of formula. The cans are sold in cases of 6 for $204 ($3.40-4.25/serving).
Honestly, I think it will be manageable. I said to The Mister that we could easily make up the cost if we gave up beer and lattes, and I was only half-kidding. There is a chance that insurance will help out. We Minnesotans are some of the lucky few who get mandated coverage of "medical food" in the case of certain conditions, FPIES included. I'm not sure what kind of proof we will need to come up with to show that Punky truly needs formula, but it might be worth a try. Another great resource is the FPIES Formula Bank that I have connected to on Facebook. It was started by FPIES parents who have unexpired, unopened packages of various formulas to give away or sell. There are posts almost every day by people who bought a case of something that didn't work out for their child and they want to get a little of their money back and pass it on to someone else who can use it.
Of course, we are going to keep working on building up the variety of real foods in Punky's diet until the day comes when she doesn't need any supplementation at all. But a year or two of formula should help her stay on target with normal growth.