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."
Thursday, November 25, 2010
A Year of Thanks.
Thanksgiving last year is when I started the supplemental soy bottles, we were going to be traveling for the Holiday weekend and since we knew regular cow's milk formula's were not going to work for our little man, I was ready to try some soy formula with him. I'm not even sure if I anticipated there to be any problems as two of my other boys who have milk protein intolerance's have tolerated soy. I remember the trip up north was good (6.5hr drive) and the weekend visit was great. I remember he didn't eat very well, was refusing the spoon a lot by this point and the only thing he had been taking at home was banana, oatmeal and sweet potatoes and I had brought along the Gerber oatmeal/banana jar food for convenience, but he wasn't especially interested in that either. He did eat graham crackers and cheerios, and cereal stars well. I wasn't too alarmed in his poor appetite for his food since it is typical for my boys to get out of sorts and not eat well while we are traveling. I try not to stress about it, they'll eat when they are hungry and when we are up north visiting- it is visiting the grandparents so I want their visits to be fun. He took the soy bottles a few times over the weekend and we were trying to use them for on the way home because I did not have anything pumped and he was very,very fussy the whole drive home (had been so happy on the drive up). I remember it being a very long day and lots of crying, and knowing he was just uncomfortable but not yet associating it with the soy formula. And I do remember thinking it was from my diet - too many treats over the weekend, as I have IBS and have trouble with fruits,milk, and wheat; that I felt was carrying over into my milk supply and disturbing him. Now, looking back- it was more likely all the soy. Especially knowing what we know now about the villous atrophy that just came into our picture after our soy trial. Villous atrophy causes the body to absorb zero nutrients (at the points where it is affecting the intestines). I look at Little Man's growth chart and the time from when we started soy to 6weeks after that, he went from in the 40th% down the to in the 20th%. He also had severely low Vit.D and low iron levels at this time. This piece of the puzzle is coming more into focus now....villous atrophy from soy protein. Does Little man have Milk/Soy protein enteropathy and Rice/Corn/Grains FPIES? Is this why his illness is so complex?
I take a look back at a year ago today, because we really have come so very far. A year ago today we were starting our downhill slide with Little man, we were losing our grasp and it was after the holiday season that I knew I had to get more help for him. It couldn't be "just" milk/soy protein intolerance, it wasn't "just" reflux, he wasn't gaining weight and was starting to lose, his pain was growing daily, his sleep patterns were erratic and his night sleeping was pain filled, he was hungry but wouldn't eat, and he cried and cried and cried.
Since then, we have done elimination diets and trialed reflux meds, we have ruled out Eosinophilic Esophagitis, and Celiac Disease. We have had gut rest and changes to amino acid formula. We have food introductions, and fails that led us closer to the FPIES diagnosis. We have received help and support from some great Dietitians. We have traveled half way across the country for a consult with an expert Allergist to confirm the FPIES diagnosis. We have found a very sensitive trigger (corn) for Little man and moved away from any and all sources of it -- to have the daily pain attack and sleep disruption and random vomiting all STOP. We have formulated a formula, made with ingredients his body tolerates. We have been able to add millet and peaches, very slowly, to his diet. He may be failure to grow and gain weight but we have kept him thriving, and growing at his pace. He is a smart, active, interactive, inquistive, happy, kind, quiet and loving little boy. We have found a very supportive, and knowledgeable GI doctor, in our home hospital, to help us manage this complex, chronic illness and manage it at home. At home, where we can maintain a quality of life and normalcy of life for Little Man's brothers- despite food trials, hospital stays and diagnostic procedures.
And we have slowly been adding pieces to solving the puzzle that is Little Man.
We have come a long way, and today on a day of Thanks- we are thankful.