Mothers Intuition

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."

Sunday, March 6, 2011

Probiotic Day 9

Actually today is probiotic day 13 but it was on day 9 that things turned around.   Was it die off?  Adjustment?  I don't know; but every symptom went away and he has been doing beautifully with it (he even voluntarily takes it!).   I suspect it will be one of those things we won't really know until more pieces are put together- more steps are taken forward (hopefully forward!).   I am always looking ahead to next steps and Dr.J had discussed that if/when he tolerates the first strain(s), we could add a bifida strain.  I have one ready but not sure when we will add it.   For now, I will play around with the dosing (should ideally get it 2-3x/day so we started that today).   And, we still attempt to try broth.    The lamb was a no-go for now, so we moved on to the beef.   The beef cooked up much better but he did not like the initial tastes of it.    I still have yet to figure out how to trial a food he won't put in his mouth.... As always, we will get creative and hope and pray for the best!  

We will also be getting another weight check later this week, and hopeful he is continuing to gain weight as he continues to eat ~1300-1400calories/day (24hrs/day)!


  1. Hello, do you think is possible for me to contact you somehow,I needed some advice with my 8 month baby..feel lost....;-)

  2. Sorry don't know how to add msg with name..;-)

  3. Ok, now I did, ;----)))))