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 7, 2011
Is Banana safe?
After being off of foods for a year, a young child does not have all the same drives to eat as you and I do. He does want to eat, but sometimes doesn't know how, or isn't sure if something will be safe. When something causes him stomach pain- FPIES related or not, he associates that with the food and then stops eating the food. There have been times when he will also stop drinking his formula (despite that being safe and not causing any pain). There is a lot of cheering, creativity, and encouragement just in food trials.
By the 3-4th try of banana, we began to see symptoms of concern.....disturbed sleep, tummy pains, decreased appetite, even fevers- that may or may not be related. Not sure of FPIES or not, but becoming clear it is yet another food to shelve until we can figure out what is wrong with his digestion. We are sure there is something connected to his digestion of these foods that is affecting his tolerance of them. Will they lead to a full FPIES immune response? We are not sure. But 1/4 tsp of food should not cause as much pain and sleep disruption as it does for him.
Banana was right before ProBioGold (probiotic) and the beginning of our slide (that we are still in), so was it initated by banana, ProBioGold, or a "simple" virus? And why does he struggle so much with any changes? Any movement away from his baseline and we risk the vicious cycle.
Fast forward to a month later (April 27) and we are in the store getting supplies for his homemade formula and his 3yr.old brother promptly puts banana's in the shopping cart as his addition to helping with shopping. My immediate initial thought is: I wonder if Little Man will ask for one if I buy these? Then I think of my 3yr.old and how crazy it is to be thinking of NOT buying him banana for a snack! So, I buy them and sure enough- Little man wants to share in the banana snack of his brother the following day. I let him, he is asking for food, a food we do not know for sure if it is unsafe, a food that we just a month earlier had been telling him was "his" food, that we encouraged him to try and it was "yummy". And now, he sees this food again and is asking me for it. A banana. I give it to him and he enjoys nibbles of it. He enjoys being included with his brothers snack more than the food itself! I am delighted that day as evening and the entire night go on without one concerning symptom. He has now had banana a few times now, after having it in his daily diet a year ago, and this snack did not bring on any symptoms?
Two days later, he has it again....although this day, we get symptoms. But now, we are not sure if they are from banana or something else. Is banana safe? The only way to know will be to try it again.