Tuesday, June 21, 2011

Mixed Blessings and Patterns

From the time our children are born, and some would argue before then, they are seeking patterns. The human brain is programmed to find patterns, in faces, in concepts, in everything. We use patterns to help us better understand the world around us. For us FPIES parents, we use patterns to navigate the day to day, to keep our kids healthy, and to look for hope.

Its so strange to me-- the very patterns that can seem so devastating are the same patterns that we use as guidelines for keeping our children healthy. I was talking about "red flags" the other night with a lovely friend and fellow FPIES mama-- how our kiddos have certain warning signs, "red flags" if you will, that tell us, the parents, that something is just not right. For B, it has been skin symptoms for the last 6 months or so that have been added to the repertoire of patterns in how her reactions present. In addition to the reflux, the diapers, the behavior and sleep changes, we now see rashes, hives, welts. It is her body's new way of getting us to listen, to slow down, to re-evaluate. When I see these signs and her discomfort, my heart sinks. I feel sad for her and in my head I can't help but think, "No, not again! Not THIS food too!" 

And these same symptoms, these same heart-sinking feelings--- these are what save our children. This is OUR "ace in the hole" as parents, if you will. Learning the patterns, knowing the child, and learning how this beast manifests itself in them. It really is a mixed blessing. Until there are tests or litmus paper thingys we can stick to their foreheads for answers (how nice would THAT be?!), we would be lost without these dreaded patterns. For B, recognizing these "red flags" is what has and will continue (hopefully) to save her from full blown reactions, from further interruption in her happy days and development. Being able to interpret and identify these patterns gives her more toddler time. More time to paint and less time to puke, to be blunt! 

So as we pass by another fail (lemonade! grr) and move on to a new trial in the AM (canellini/ white beans), I will try to focus on the usefulness of these patterns. FPIES is a nasty disorder but if I can better understand and utilize what it throws our way to HELP my girl avoid future distress, so be it, I will do it; I will use the symptoms of this disorder as a tool to thwart itself from taking more than it has to from our sunny summer days.


  1. Please let me know what the scope results were? My son is also very limited on the foods he can eat - i've read they outgrow most of their food intolerances by 3. The real allergies (IGE) also are outgrown by ages 5 to 15 y.o. for most. Did the scope show anything???

  2. Everything came back clear!! It was such a huge relief! Just a note-- FPIES is an actual allergy and not an intolerance, as many would say. It is Non IgE but involves other cells in the immune system (T-Cells produce the reactions we see), so it is still considered an immuno-based reaction. Many children do outgrow their FPIES triggers by three, others outgrow them later on, some others do not outgrow some of their triggers.
    We have been told to expect B to outgrow most of her triggers by kindergarten/ early elementary school (she has 22 at this time but still is reacting to new foods) but that some of her severe triggers are not likely to be outgrown.
    Of course, this could all change-- FPIES is such a strange beast and so little is known about it to begin with. I just saw a post from one mom whose 12 month old daughter has outgrown all of her triggers! And I saw another post from a mom whose daughter is still reacting severely to some triggers and the child is 11.
    It seems like there is such a broad spectrum of outcomes with FPIES. I hope that your LO outgrows at least most of his triggers soon-- ideally, I hope he is one of the children who outgrows them all! Thank you for thinking of B!!