A strange call

Before we even concluded our first food trial (beef), I received a strange call from our allergist, who had, for some reason, changed her mind on the 4-3-4 protocol to which she had agreed only a week or two prior. I was really happy with her at our first appointment, but during the call she said a few things that sent me into a tailspin of anxiety. Her exasperation with me was perplexing. I'll paraphrase, and put in my reaction to each comment.

• This is moving too slowly. Can you trial foods for only 3 days, or do multiple foods together?

Even for non-FPIES babies, you are advised to trial one food at a time for 3 to 4 days and watch for allergic (oral allergy symptoms) reactions. Why would I be even LESS cautious with an FPIES baby?

• You're "in a window where he should be trying new tastes and textures and your breast milk is mostly water" - that's not enough for him at this stage of development.

Agreed, we are in an important window for babies to accept new tastes and textures so I am varying textures and going as fast as possible with food trials (I'm using the break from one food to introduce another food). But, I've been told over and over again that breast milk should be the main source of nutrition for babies under the age of one. Also, although it does contain water, breastmilk is also full of important nutrients and immunological and growth factors among other things. According to Health Canada: "Breastmilk supplies the correct quantity, quality, and absorption of nutrients (Butte, Lopez-Alarcon, & Garza, 2002). Infants digest it easily and efficiently (WHO, 2009). To support optimal growth, the balance of nutrients in breastmilk changes during feedings and over time as the infant matures (Kent et al., 2006; Riordan & Wambach, 2010). Beyond nutrients, breastmilk's unique and complex composition includes bioactive factors, such as anti-infective immunoglobulins and white blood cells (Riordan & Wambach, 2010). It also contains factors that stimulate the maturation of the small intestine and aid with the digestion and the absorption of nutrients (Hamosh, 1996; Sheard, 1988). The importance of breastfeeding is well recognized for infants' short and long-term health (Horta, Bahl, Martines, & Victoria, 2007; Ip et al., 2007; León-Cava, Lutter, Ross, & Martin, 2002). For example, breastfeeding is associated with enhanced cognitive development, and appears to protect against gastrointestinal infections, acute otitis media, respiratory tract infection, and sudden infant death syndrome (Kramer et al., 2008; Quigley et al., 2011; Ip et al., 2007; Hauck, Thompson, Tanabe, Moon, & Vennemann, 2011). Observational research also suggests a protective effect of breastfeeding against obesity later in life (Arenz, Rückerl, Koletzko & von Kries, 2004, Ip et al., 2007)." Full references are on the linked page.

• There's no evidence that you need to include a break in your trials.

More accurately, no scientific paper, has studied a break during a trial as being important for discovering a reaction. Actually, no scientific paper has studied ANY method of trialing foods. This paper does mention a break and there is mostly anecdotal evidence about reactions occurring after a break. I contacted I-FPIES who suggested a straight 5-7 day trial although they also have anecdotally heard of reactions after breaks. I'm not sure our allergist understood that I was giving a new food during the break.

• He is unlikely to react to anything other than rice - "I have yet to see a patient with multiple triggers" in my practice.

There are countless reports of patients with multiple triggers. In fact, the same study I mentioned above found that 65% of babies with FPIES to rice have other trigger foods. Even if the sample size is small, that still means there are babies with multiple triggers.

• Maybe you should "stop reading the [other FPIES] blogs" as it's probably just "too much data".

So, best to fumble around in the dark when dealing with my child's health, even though I could learn from previous parents before me? There's no such thing as too much data for me. I'd rather know all scenarios, including the worst cases so that I can prepare for the worst while hoping for the best. Ignorance of other people's experiences doesn't seem prudent, especially given the paucity of scientific literature available on the subject.

• "I'll apologize and backpedal if he does react".

Will you come to my house and to the ER with me while he vomits and cries? Will you watch him vigilantly all night and sleep in his nursery with me? An apology does not make my baby suffer any less.

• "I'm not used to micromanaging my patients" like this.

This one hurt my feelings - was she slapping me on the wrist for asking a clarifying question or being too careful with the trials? What exactly are you micromanaging? You called me to clarify one question I had ("should I be feeding him the food I had previously given or should I trial them again?). I'm the one who has to log everything and every time he eats, photograph his poops, and watch him like a hawk.

• Send me all the literature you have on FPIES and send me a weekly list of what he's eaten.

This, I was happy about. At least she was willing to read up on FPIES and keep on top of our trials, albeit somewhat resentfully. 

We've started on sweet potato now, which is essentially a re-introduction as we've had it previously. Our allergist suggested corn as a starch. I will comply, but it seems rather devoid of nutrients and unnecessarily difficult to digest for a baby who needs nutrient-dense food that won't aggravate the GI tract.