FPIES Experts

I've had this post sitting in "edit" since Dec.22.   I sat in the hospital room with our Little Man, recording his daily activities (intakes, outputs, symptoms, etc) in my logs as I always do, watching over the plan laid out by doctors, checking on ingredients of things to be put in his body or on his body.  I wanted to trust doctors, doctors who I know have my Little Man's best interest in mind but also doctors who have no experience or prior knowledge with FPIES- or really anything like it.  Instead, I have had to become knowledgable in FPIES.

I've been finishing this post in my head with how I want to desribe what an FPIES expert is.   Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".   Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.

Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes.  To add to that, the parents of FPIES children quickly become experts in FPIES.  We have to, there is so little known.    Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies.   At this time, the most I have learned is from other moms, found in online communities for support.   We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.

A few days ago, I did a post on what FPIES has taught me.   Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer.   But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies.   About digestion and GI health.   About food, and how it is made,processed and produced in this country.   All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience.   What I haven't learned first-hand, I have learned from other moms- with first hand experiences.  Connecting all this together for real FPIES information, real help.  

This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet?  To tolerate foods?  God is giving me a very important, and strong life lesson.  He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children.   He knew that with my background, and my nature to want to help others- He could use me as an instrument. 

If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist,  if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him.  If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care.  If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES?   God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families. 

We, the moms, are FPIES experts, and the learning continues daily....

Driven

Ok, some who know me well enough would better describe it as obsessed. But I chose to describe it as driven. An obsession would bring me pleasure, and obsession I couldn't stop. Navigating through FPIES does not bring me pleasure and I could stop at any time that my child could eat "normally".

I am driven because of my son's needs. I am his mommy. This is my job. My other job? I am a Registered Dietetic Technician. My life is all about food and nutrition. I now hate food. Ironic situation I am in.

My perspective from a DTR has made this both easier and more difficult.

It makes it difficult because I have seen things from the clinical perspective. I have seen kids much more sick than my little man. This is why it took me so long to ask for help. But I have a sick child too and he deserves every chance at health that any other child does. It is also more difficult because I don't always hear just what the doctors saying to a mom, I also "hear" what they are thinking as clinicians. Right now, I know they are thinking I am being reckless with my baby boy's health and that maybe I'm even a little bit crazy at the expense of keeping him pain free. And that by building him a formula, I am depriving him of nutrients yet to be identified. Little man has a clinical diagnosis- based on symptoms. The labs and tests that guage his illness are in the symptoms that the parents tell. This makes it difficult because the medical community is taught- is centered and anchored on the concretes. No one can just "take my word" and they can't "measure or biopsy pain", or measure "inflammation from pain".

Having a clinical nutrition background has also made it easier. The world of allergies is not foreign to me. The world of nutrition is my "second language". My interest, and the reason for getting into dietetics, has always been the GI and digestion component. My two worlds collide with this little known diagnosis of FPIES. I have a deep rooted faith and I know God has given this little child to me for a reason. It is because I am driven for his care that I have come this far in helping him. I am driven as a mom to help my son, I am driven as a dietetic technician to help as many other FPIES kids as I can. It's what I do, it's who I am. I am driven.