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."

Friday, December 3, 2010

Reset button?

We all, in FPIES world, wish for the reset button.  A "fail" is introduced, sickness prevails, weight loss, oral aversions, reflux pains, eczema flares, etc.   We have been in a vicious cycle with Little Man for many months now.  We find enough pieces to hold up a few sides but then it makes another side fall down.   We found FPIES, we learned how severe and sensitive triggers are, we removed all forms of all of his known triggers and we got him out of daily pain and random vomiting.   Removing daily pain was a BIG step for us, but that meant losing the reliability of an elemental formula, and safe vitamins.  We built him a formula that he could tolerate and gain weight on but he continued to struggle with blood losses and poor absorption of iron on a plant based formula diet, with no Vitamin C. 

Pain and vomiting controlled.  Check.   Adequate calories for growth.  Check.  Introductions (slowly) of a few foods (millet and peaches).  Check.   Blood transfusion to rebuild stores.  Check.   Iron supplement daily. Check.    Soy challenge to begin to add more varied protein sources to his diet for iron.  Check. 

Spiraling begins: Bottom falling out on 4th day of Soy challenge.....villous atrophy and inflammation on scope but happy boy once soy is removed.   Omeprezole is started to help heal inflammation, and help with his empty stomach pain.  Omeprezole brings on it's own set of side effects.  Hemoglobin begins falling again.   We were moving right along....we've hit a vicious cycle that we can't seem to break. 

Hematologist consult yesterday morning.  Long discussions about his need for iron (yes, I know he needs it and we are giving him all the doses his body can tolerate and he doesn't spit out).  He is gaining weight, primarily doing well but his iron is falling again.   It is discussed that this is the villous atrophy and that it is evident it is not healing as fast as we would like it to- to restore the villi to be able to absorb the iron we give him, and supplement him with.   IV iron transfusion therapy is discussed.  He will need 10treatments, 2x/week; starting as soon as possible.  We decide we will start tomorrow.   We are worried about his reaction to it, but it is pointed out..."we have no choices".   Agreed, we are already at the point of TPN discussions; so we are at the "end of the line" for choices/options to get him back on track.   Appointment is set up for IV Iron transfusion therapy for Saturday morning.   We then proceed to the GI doctor's office for a weight check and further discussions on next steps....

IV iron transfusions 2x/week means he will have IV inserted 2x/week for the next month and a half.  GI doctor prefers to have a PICC line placed....if we are going to place a PICC line, then we should also do TPN with that PICC line and see if gut rest with alternative nutrition can get him the "Reset" he needs to get more control of this diagnosis.   Admission for Monday morning is planned for PICC placement and begin TPN.  He will continue to get his IV iron transfusions during this.  We don't know yet how all this will go, or all the details surrounding it.  Honestly, we are still processing it all.   We know he could benefit from the gut rest, and the nutrition.....

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