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, January 15, 2011
Squirms in the night....
A few nights ago- just fresh on the excitement that Little Man was eating his Merry Muffins; we had a rough night of no sleep, coupled with gas? attacks. He was just so uncomfortable. But it wasn't constant, it wasn't inconsolable- he would console, fall into what seemed like a relaxing deep sleep; only to be awoken by a waxing/waning, what I can only think to be gas pain. It wasn't reflux-y pain, he wasn't arching and it was lower. He was thrashing and kicking his legs...and passing gas.
We make it through the night, and he is a happy boy in the morning. What is this about? These are his safe foods, safe ingredients to make a safe food- muffins. What is going on? Are his safe foods not safe? Is his inflammation hurting him? How much inflammation does he have, from the fermented corn starch (tested negative for detectable proteins but apparently still has trace or cross contamination of corn) in that vitamin trial.
Is the inflammation making it difficult for his body to breakdown/process/digest even his safe foods? Maybe.
I post the question for feedback on the active FPIES support group and am reminded of the other little one's that experience similar "threshold" to foods - grains, vegetables, fruits, and sugars. Daily servings need to be monitored closely as to not cross over a threshold of tolerance (for unknown reasons, not FPIES triggers- simple digestion tolerance)- carefully teaching the body of the safe food. Also, other mom's express success in pseudo-rotation type diets. I have had this thought about Little Man for some time....that even when we do get "passes" for a tiny menu- we will have to watch his menu closely as his body appears to be so sensitive to subtle changes.
Why does this happen is my pondering question. Pondering....pondering....pondering....because if I can figure out why it is happening, then I can help him more- right? I hope so.
I wonder if it is similar to a flare in Chrons or colitis, a flare of intestinal inflammation so bad it causes a bowel obstruction. The treatment for this is often bowel rest and a bland/low-residue type diet. Millet and peaches are safe-nonFPIES trigger foods, but if he has inflammation - his body may be less able to digest the sugars and proteins in these foods. We will have to limit his consumption for now, play around with recipe modifications, and monitor for signs of healing from the recent fail.
The next 2 days, with scaled back amount of muffins- we have had better sleep. Still waking up, but to eat and then goes back to sleep (mostly)...
For now, Little man continues to take his hemp milk formula very well - meeting his caloric needs daily. Weight gain should follow.....