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."
Friday, October 22, 2010
It was last Dec., after 4mo of trying to figure out on my own what was going on with his little body, trying to control things with a milk protein intolerance consideration (new foods should have worked, as long as we avoided dairy)....but they weren't working. Soy formula was failing, building up a resistance and causing it's own host of new concerning symptoms. The biggest thing that I was able to finally connect that his body was showing a sensitivity build up to soy was a croup-y cough. Others have talked about this similar type of cough with food reactions (often soy is a culprit)- I wonder if it is actually from the reflux? Could be....warrants further investigation at some point. But for now, either way- his body was not tolerating the small amounts we were doing. By mid December, all I could think was- lets just get through the holidays and then I am going to have to bring him in to his pediatrician because I simply can not grasp a handle on this by myself anymore. I already knew that outside of frank vomiting and bloody stools- little is recognized about delayed food intolerance's in the medical community. From a dietetics standpoint, we see things differently but we also remain cautious as to not encourage someone to unnecessarily over-restrict the diet....especially the diet of a growing child. Restricting my son's diet has never been my intention....adding to it has. But FPIES takes that away, in a cruel way. Food is not just food anymore. Allergies take on a whole new meaning.
Ok, back to December. Our pediatrician agreed little man was likely building up an intolerance to soy, as many dairy intolerant infants do, and to try him on a 100% no milk,no soy diet (breastfeeding for me and his foods as well), keep a journal, and try Nutramagin, Pregistimal or Alimentum. I chose Nutramagin. Only to have him projectile vomit all over our kitchen, multiple times that day. We even tried it a few more times- just to be sure....each time being more and more obvious and concerning. Back to the pediatrician and labs were checked for allergies, and gluten sensitivity, CBC, and iron, and 'did I want to check anything else'? Yes, I'm curious to what his Vit.D levels are. He was a breastfed baby and research is showing there is higher incidence for some Vit.D deficiency's in breastfed babies, we're getting labs- lets check that too. No one, not even me anticipated the results we got. His level was 9ng/ml, with normal being 24-80ng/ml. Diagnosis: profoundly vitamin D deficient. We immediately started a supplement to restore these levels. But my concern remained....how did his levels get so low? Was my milk this deficient? I had my levels checked just to be sure I wasn't in trouble too....no, my levels were within normal limits. But, research has shown that even if mom is not deficient- breastmilk can be (and often is). But really? This deficient? How normal is this? I already knew by his actions of gas and stomach discomfort that he was having digestion issues, maybe inflammation - my instincts were telling me this....that he had gut inflammation in his small intestine and dysbiosis in his colon. The gut inflammation was causing a "leaky gut" and causing his body to be sensitive to dietary proteins. These were my instincts- I had never even heard of FPIES. Until I printed off an article from EMedicine about Protein Intolerance, there was a brief mention of it there. I highlighted it in my reading, along with milk protein intolerance, multiple protein intolerance, Eosinophiliac disorders, Celiac, protein enteropathy. My research began with that Protein Intolerance article. My instincts were confirmed by his labs showing a low iron and low Vit.D, as well as a low IgA (mucosa lining of GI tract). Now what to do with this information? What do we do next?