Trauma and FPIES

I read a wonderful short article in Sojourner on-line this week written by Catherine Woodiwiss titled A New Normal: Then Things I’ve Learned About Trauma (http://sojo.net/blogs/2014/01/13/new-normal-ten-things-ive-learned-about-trauma)

The very first thing she discusses is how a traumatic experience or long term trauma permanently changes us. Trauma changes the fabric of our being.  It affects how you interpret the world.  Living with FPIES is a traumatic experience for the entire family.  While Jackson deals with pain, vomiting, diarrhea, constipation and mucous filled stool, limited food choices, texture aversions, no ability to commutate with words his pain and discomfort (the list goes on) during post exposure, my wife Heather and I have our own traumatic experiences too. (My mother does as well as we live with her and so does Sean, he doesn't like when his brother is very sad, he often will cry in distress when Jack does.) We watch and hear our child in various levels of discomfort and there are times where there is little that will comfort him.  We have anxiety responses to foods.  Just thinking about a new food trial is scary.  How do you choose? We don’t want to give him something that will make him sick and hurt and yet that is what we have to do in order to know if he can have the food.  It’s incredibly counterintuitive. I’m literally afraid of pears right now as they will be his next trial. Today we tried broccoli.  The poor guy was so overwhelmed by the texture and taste of a minuscule amount he gaged and vomited. (Not an FPIES reaction.) We have shelved broccoli. The doctors gave us a list of food families and we are to pick from the same families he has passes in with a few more options outside those as well, dairy is off the table until he is over 3, eggs until about 2.  The highest FPIES trigger foods are dairy, rice, soy, barley, peas, green beans, sweet potatoes, squash and all poultry.  This is not an exhaustive list and honestly in my experience someone can be FPIES to any food on the planet. Jack can have peas, squash, sweet potato and chicken on that list.  He failed green beans horribly, just like the corn. Barley, rice, dairy and soy are not in the cards right now. Just think for a moment what it feels like being afraid to give your baby food? Not just a certain food like eggs or peanuts but almost ALL foods.

We no longer know what life is like without FPIES. This is our new normal. What used to be thoughtless activities are now front and center and frankly exhausting.  Leaving the home with the boys is a painstaking process.  I pack snacks for Sean and foods that are safe for Jack (mostly still baby food purees), formula and bottles.  We haven’t been on a playdate since the summer because we don’t want Jack to get sick.  He cannot have antibiotics like most kids.  Jack cannot tolerate the corn fillers in them, ALL of them.  Having antibiotics compounded is often counterproductive because it can take days to get them. Our best option is a shot of an antibiotic called Rocephin.  Hopefully our pedi will have it in stock when we need it, you always run the risk of it not being there for him on a day he might need it. Jack can’t use finger paints, crayons or play with play-doh, you guessed it: they are made with corn. I blow bubbles with him and then wash his hands immediately. We are planning to take a trip to Michigan in June for our niece’s graduation party, this is a terrifying thought. First of all, flying with 20 month old twins, enough said. But how are we going to keep him safe in someone else’s home? Can we get all his safe foods in Michigan? I have to research all this before we go. Our family is wonderful but they don’t live with this daily like we do.  It’s quite an adjustment and I know they are up for the challenge because they love Jack. I’m guessing that many of you reading this who don’t live with FPIES are maybe feeling stressed, overwhelmed by the thought of all this? You should be! It’s incredibly intense!

Where is the good news in all of this? Heather and I have found strength we never knew possible. We move with courage every day. We have the joy that is Jackson Harris and the joy that is Sean Timothy.  Jack has FPIES, we can’t change it but we sure as hell can try to heal him of it.  We work with a great medical team and are seeking information on holistic and biomed approaches to treating and healing FPIES. I believe the cure to FPIES is where western medicine meets eastern medicine and there isn’t one answer that is right for all. Living with FPIES isn’t easy or fun but it’s a gift. It brings new learning with it daily.  It brings all your “crap” to the top.  Any old wounds or traumas you haven’t addressed – HELLO. It taxes your marriage more than just having children does. Heather and I are learning to work more closely as a team. Some of your friends think you have fallen off the face of the earth or that you are “too over protective “of your children. I assure you, if you’d seen and lived with what we have, you’d know this wasn’t the case. Our dear friends have risen to the top as they always do. My FPIES girls always have my back. (Heather isn’t able to research and go on the boards because she works 40-50 hours a week.) These are only some of the gifts of the trauma that is FPIES. So there you have it:  the good, the bad and the ugly, the wisdom, strength and courage that comes with living with FPIES and the most courageous and wise of us all in this experience is and always will be our son, Jack.