Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Saturday, October 23, 2010
But I've never heard of a child reacting to an elemental formula....
Allergist #1 was sure FPIES was not what was ravaging our son's body because he had not ever experienced full shock- even though the research shows that "only" 20% of kids do go into shock. Although, she also admitted that she has only diagnosed one case in her career, and that case is quite severe. I have actually since "met" this mom (online) and yes- her daughter's case is quite severe in her reactions; but otherwise their FPIES course are similar. So, on to a 2nd opinion. I have to say here, that it is funny to me that doctors are surprised when you ask for, or seek out a 2nd opinion. A good doctor would encourage it...would admit their humanity and that they simply can not know everything; some other doctors are challenged by it...what did they miss? I respect the doctor who admits their humanity, that admits they don't know everything but are ready and willing to learn. With their training, experience and expertise; they can catch up fast on something new. I caught up fast- because I live this day in and day out....I am gaining more experience than any study or research article could ever quantify.
Allergist #2 had more experience with this condition,and conditions similar to it; and was able to recognize our son's FPIES immediately by symptoms presented in his history. He was also able to recognize a likely corn trigger intolerance....because of his experience. "There is a small percentage of kids who react to even the elemental formula's and it is unfortunate because it makes it very difficult"....I can attest to that!
Allergist #3- confirms the FPIES once again and gives us a great empowering statement for this difficult clinical diagnosis. "He has FPIES, this has been confirmed by two allergist, here is some information if you would like to learn more"..... So, on to Allergist #4....and back to the clinic we started at- in our home.
Allergist #4 wants to be part of our "team". I've spoken before about how FPIES is best managed by a team- GI, Allergy, Nutrition,Pediatrician, parent (a good social worker would help too- and I'm working on that). I am encouraged that he wants to be a part of the team, wants to be a support for us and a resource of our pediatrician to help us manage this chronic illness that has become complex for little man.
A struggle we still have is the fact that we no longer have little man on an elemental formula, and will not be putting him back on it; instead we have him on a formula that I make. It is adequate in calories, carbohydrates, protein, fats, and macro nutrients but it is lacking in some micro nutrients....nutrients that should be filled in by a diet. But, we have yet to find a diet little man can tolerate in large amounts to contribute to his nutrition. The "easy" answer to the doctors is: put him back on the elemental formula....because after all, "I've never heard of a child reacting to an elemental formula".
I am in nutrition- a dietetic technician, I am Registered- which means I must maintain a certain amount of continuing education yearly. I also am practicing- which means I have a job, a job where I gain more knowledge from my experience. I attend seminars on GI and nutrition and allergies. I have special interest in GI, allergies, and pediatrics. I had never heard of FPIES, and I certainly would not have suspected it to be such a severe and sensitive condition.....but that doesn't mean it didn't exist. It meant simply that I had something to learn.
Many will say that they have never heard of infants being allergic to breastmilk, and yet many infants are....for multitudes of reasons, some still unknown. If a baby can be allergic, or sensitive, or reacting, or not thriving on breastmilk-- that is made from God....Why is it such a stretch that an infant can be allergic to something made by man? There are many additives in formula. The elemental are designed so that the proteins are broken down to single amino acid (something otherwise the body has to do). So, instead the body does not have to break it down- giving it little, if anything, to react to. It simply absorbs it, providing the nutrition the body needs. But, the formula doesn't just contain amino acids. It contains fats and carbohydrates (in the form of oils and sugars). My little man was reacting to the sugars - he has a sugar intolerance but it was more than that, he also has a corn trigger. The corn syrup solids are strained down to remove the proteins but there is chances for trace proteins to remain. FPIES triggers are highly sensitive and some kids can, and do react, to trace proteins....it is why my little man could not thrive on my breastmilk -- reacting to trace proteins.
Everyone following me understands this, right? It makes perfect sense to me, I am living it - I have a perspective on it that I cant' seem to illustrate. How do I get his doctors to understand this? The same doctors that not requested I stop breastfeeding, but insist that I stop breastfeeding as it was clear he was reacting to my milk- despite my giving up all sources of dairy, soy, and gluten. It wasn't enough, he was still reacting to something. I knew that, I knew I had to stop nursing him- I knew something in my diet was making him stay sick; so either drastic measures needed to be taken or I could switch him to an elemental formula. He was so sick, we had to do something quickly. He improved some on the elemental formulas- it helped some but again, just like when I gave up some of his triggers for breastfeeding him and saw some relief - it wasn't enough and he was still reacting to something. In my diet, it was rice and corn, and maybe other things we have not yet identified. In the formula- it was the corn and maybe even the soy oil.
I had never heard of FPIES or reacting to everything in breastmilk or reacting to elemental formula's either.... but I have now.