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."
Tuesday, December 14, 2010
Not just an intolerance....
An intolerance (such as lactose or fructose intolerance) is a lack of tolerance, the body lacks sufficient enzymes or digesting particles to sufficiently breakdown components of the foods for proper digestion. This causes pain, cramping, diarrhea, constipation, and general dysbiosis and possibly some malabsorption as the foods pass too quickly and improperly digested through the GI tract. It is a limited response, and it does not cause a systemic allergic reaction in the body.
FPIES is not just an intolerance. It is an allergy, not an antibody producing allergy but it is a full system response -- ask any FPIES mom....it is not restricted to "just" the gut. It is an allergy of the gut but it is not limited to the gut. The allergic response is a gut response but the allergy is system wide. There is a brain-gut connection, recent years research has come a long way to show more and more connections to the brain-gut connection for such things as Autism, Crohns, Fibromyalgia, and....allergies. Maybe that is the only connection....but why, in a reaction (before or after or during) does my little man experience eczema, asthma, disturbed sleep, hyperactivity, mottling of the skin, edema/puffiness, etc?? This is not just an intolerance.
Celiac disease is an allergy to gluten. FPIES is an allergy to proteins- any proteins can fall in this category. Gluten proteins in Celiac disease cause villi damage in the small intestine, resulting in atrophy of the villi and malabsorption of the nutrients. Mild villious atrophy, inflammation, gastritis, colitis are all seen in FPIES- it is why it is so named Enterocolitis (entire intestines are affected).
A good article was shared today from http://www.celiac.com/: Unglued:The Sticky Truth About Wheat Dairy Corn and Soy and also discusses the malabsorption of nutrients in response to allergy from proteins.
Little Man is receiving nutrition via IV- his calories, protein, fats, and carbohydrate plus vitamins and minerals are going into his body directly into his bloodstream. He has villous atrophy and has been unable to absorb his nutrients sufficiently. He also has inflammation, furthering his malabsorption of nutrients. We anticipate this to heal his intestines so he can once again have the chance to absorb nutrients properly, and hopefully begin to pass more foods to include in his tiny menu. His IV nutrition has corn derivatives in it. He is allergic to corn, has confirmed FPIES trigger response to corn. Dextrose is derived from corn. Mannitol in his multivitamin is corn derived. These are broken down, hydrolyzed. These are not going in the gut, but through the vein. FPIES is thought to be a T cell response. T cells are the gate keepers....are we sneaking by the gate keepers by not going through the gut? I want to believe we can....but something tells me we are not completely. My main hope right now is that we are sneaking by enough and that his body doesn't continue to build this response we have been seeing, that it can "tolerate" it long enough to continue to provide him the other nutrients he needs - giving his gut the rest it needs.
Dextrose and Mannitol are hydrolyzed to be broken down to be very low protein....FPIES triggers recognize trace proteins, cross contamination of proteins. This is understood in Celiac disease in the medical community (although still new, it is recognized and understood- why not FPIES?).
Nutramagin is a formula that has hydrolyzed whey proteins (dairy), less allergenic dairy proteins. Little man could not tolerate (and had full blown vomiting reactions from this formula, on two separate trials) hydrolyzed dairy proteins. We know his dairy trigger is sensitive (his vomit covered my kitchen floor from sucking on a McD's fry that has dairy in it's seasoning). We know he can not tolerate even trace amounts of dairy protein, and we don't even try to give him something that has a chance of trace or cross contamination of dairy protein in it. Dairy intolerance, dairy allergy is better understood than a corn allergy.
Corn syrup solids are broken down to not contain corn proteins, but trace proteins can remain. Corn syrup solids were still causing random vomiting and ongoing gut inflammation for my little man. Citric acid induces violent vomiting. Gypsum board (sheetrock made from corn derivatives) caused a full blown vomiting reaction. Same for cardboard, and paper. His corn allergy is as sensitive as a celiac's allergy to gluten. Would a Celiac be able to tolerate wheat proteins (even broken down or hydrolyzed) in their IV?
Little man is primarily doing well, he is getting nutrition he needs, he is getting the only treatment plan that is an option left for him at this point in the road. The side affects this may cause (even re sensitizing his body to corn) may have to be par for the coarse, the risks outweigh the benefits.....if it is healing his gut. I can't help but worry....what else is going on in his body in the meantime?