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, November 19, 2010
Lesser of Two Evils....
It began somewhere around elimination diet and elemental diet...lesser of two evils? Elemental formula because at the time, I thought for sure my production was declining due to my high stress, and elimination diet that wasn't eliminating enough (and since I already follow my own dietary restrictions). We began to suspect a corn intolerance because the proteins in these formula's are amino acids (broken down protein chains).
Then on to Elecare or Neocate....lesser of two evils? Neocate because the vomiting wasnt' as acidic and it slowed down to every 4days instead of everyday. Without daily vomiting, we began to reintroduce foods back into the diet. This brought us to FPIES for the first times after reactions to rice and sweet potatoes, that are "supposed" to be so low on the allergen scale for food introductions.
Then on to travel half way across the country or stay here waiting for them to learn about FPIES enough to provide a diagnosis....lesser of two evils? A trip, turned family vacation, halfway across the country to see a specialist for a diagnosis of FPIES.
Then it was trial soy or corn first, to find an alternative formula since the one(s) he had been on were not helping him get closer to a baseline, or tolerate any foods....lesser of two evils? We knew he had a soy intolerance and was already so sick, corn we suspected but were not sure....we didn't anticipate it making him as sick as he did, for so long. We began to learn why he has has been so sick all his life....corn is in everything.
ER visits with a lethargic baby or wait it out till Monday morning to see his regular doctors....lesser of two evils? Monday morning to see his doctors because we know the ER doctors (although always helpful) will not understand what they are seeing with little awareness of FPIES at our hospital. We begin to learn how fast he falls when he starts to spiral.
Reintroduce Neocate or have a baby on a low carbohydrate diet (unflavored Original Hemp milk has little carbs alone)....lesser of two evils? We wanted to believe we could find a thresh hold of tolerance with the Neocate that could provide him complete nutrition of trace nutrients while meeting his macro nutrient needs. We began to learn more about trace proteins and thresh holds of tolerance.
Transfusion or Oral iron...lesser of two evils? Oral iron....which was going to be slow but he was tolerating and responding well to until we got a refill and it was compounded with red food dye. We begin to learn more about his many intolerance's and end up with a transfusion anyway because of continued drop in hemoglobin to dangerous levels.
Acid blocker medication or see if his inflammation heals on it's own....lesser of two evils? This one, I don't know yet....
Little man had his 3rd upper endoscopy and sigmoidoscopy today to check for inflammation and ulcers, obtain biopsy's, find the source of his bloody stools, and (hopefully) put more pieces of the puzzle together. Our (new) GI doctor is amazing and she has been very helpful, taking Little Man's health and his protein intolerance's and FPIES very seriously. Treating FPIES is all new territory to her as well but she is very familiar with other GI disorders, and has a special interest in food intolerance's and their affects on the GI tract. Her assessment of today's scope/sigmoidoscopy is that he has a fissure that could be the source of his lower GI bleeding, but also took biopsy's. He also has inflammation in his duodenum (upper intestines, right past the stomach)- this may be from an allergic inflammatory response but she also feels it is being exacerbated from excess stomach acid. This stomach acid could be from extra production due to his iron supplements- they are elemental iron and the body needs good amounts of stomach acid to absorb the iron. So, his body is doing what it needs to do- giving him rich acid to help absorb and utilize his iron supplement but then this may be impeding this inflammation from healing very quickly. He doesn't seem to be in too much pain from it the past week- occasional bouts of pain when we know his stomach is empty- but if we keep his formula flowing through at least every 3 hrs (day and night)- he doesn't experience the pain. Also, his acetaminophen that is compounded with calcium carbonate (a natural acid blocker) helps with these bouts of pain. The body needs stomach acid. Without stomach acid, he will be missing an important aid in digestion of foods. The breakdown of foods will be inhibited and could lead to increased allergenic potential. In the past when he was taking these medications, he had almost immediate yeast infections- one so bad it burned the skin off his little bottom with just the couple second exposure to the bowel movement. So an acid blocker/proton pump inhibitor could delay food introductions even longer, and give way to a host of it's own symptoms with pain. What does he need more- increased nutrition or less acid.....lesser of two evils.....