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, May 28, 2011
Blueberry, GAPS and your FoodPrint....
One afternoon this past week, I had gotten blueberries at the store because our 3yr.old has always loved them. Little Man "asked" for them. I hesitated, skins...seeds....really, I know better. In the hospital where I work as a Dietetic Technician, one of my roles is to provide dietary guidance to those who have just had intestinal surgeries- the main "rule" with that diet? No nuts, no seeds, no skins, until the gut has healed and then cautiously and one at a time introductions from there until tolerance is determined. Little man's main nutrition is seeds! Hemp seeds- ground, strained and made into milk. Millet is also a seed- puffed into puffs or ground into flour.
Awhile back, I had given thought to an order for food introductions. Following the low-allergen scale doesn't really seem to apply to FPIES as those foods are all on the "common trigger" list (rice, sweet potatoes, squash, chicken....). What about a rotation type diet? Would that work for my little delayed reactor or would it just make things more muddy and confusing? Having training in nutrition, I also am aware of every whole food playing a role in our body, some foods (called Functional foods) even beyond basic nutrition. Each food has a class of digestive components, could this be a way to introduce foods? And where do I find a guide for that?
A fellow FPIES mom, looking for healing for her daughter- who was not finding true healing on the corn-based elemental formula- was re-introduced to something called GAPS diet. GAPS stands for Gut And Psychology Syndrome. There are also diets that follow GAPS, and others such as Weston Price, SCD (specific carbohydrate diet) and Paleo among others. Which ones could work? Would any work? Are they all hype? Or are they clues to what could work? Would any of these work for FPIES? As this fellow FPIES mom began studying the concepts of the GAPS, it became clear that the GAPS MD, a Dr.Natasha McBride, had outlined a diet with those considerations in mind- which foods would promote healing and nutrition and then encourage gut flora to flourish and provide homeostasis in the gut, so that all systems tied to it would flow better from it. A guide for food introductions not based on low allergen scale but beyond that, into the effects these foods have on the digestive system through recovery and beyond. But how does this translate to FPIES, a severe food allergy?
I am a big advocate for individualized approaches to health. We all have our own set of genes, our own environmental backgrounds and exposures, our own "footprint"- or as a speaker I once attended called it, a "foodprint". I began to wonder if something like GAPS could be tailored to FPIES? Could it at least be a guide?
I have not fully studied the GAPS diet as this fellow mom has, but other moms have and are also finding some successes, which I find encouraging. I hope these moms can be encouraging to others looking to find the the right fit for their little ones. It is a lot of work, it requires thinking outside the box, it requires taking risks you hadn't planned on taking, it requires time and energy, and resources.
I'm just trying to figure out where Little Man fits - hemp milk formula provides nutrition and has provided healing for his inflamed gut. The essential fatty acids have been critical to support his healing from inflammation but there is still healing the leaky gut. We are working through that with probiotics and have noticed significant changes already. But now what? What foods come next to continue to encourage this healing path we are on?
Blueberry's are not. And Little man's system confirmed that for us. That first day, while his brother T. had a snack, he had 2 blueberries- that he devoured before I could turn around! My apprehension for how he was going to digest those skins was pushed aside by the fact that he ATE those skins! A little boy who has not had much for flavors and textures, who still struggles with gagging on his millet flour recipes, just ate a whole blueberry!
He had no adverse effects all evening....maybe he was hyper- we were enjoying an evening out on a bike ride and walk to the park- he seemed to have more energy but who doesn't when summer finally comes after a long winter? During the night, he had difficulty sleeping- whimpering, legs curled, stomach pains. Nothing extreme but clearly there....and my apprehension came back. The morning diaper filled with blood confirmed his tummy pains, and that it was just too much to expect his sensitive digestive system to digest these skins yet. Not wanting to take away a treat he was ENJOYING, I boiled the blueberries and blended them to a syrup. I made them into Dippin Dots, maybe he would be fooled- they are still round! He wasn't completely fooled but he did enjoy them! That night, no pain filled tummy aches but he was up every 45-60minutes all night long...but he did take a bottle every time....so maybe he was just hungry? The next day, he was particularly fussy all day- was this from the blueberries or 'typical' toddler behaviors? Yesterday, after a nasty diaper, he was back to baseline....confirming some issues with blueberries. FPIES symptoms building? Or digestive system not ready? Either way, another fruit is shelved for now.