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."

Tuesday, October 12, 2010

Thank you Walgreens!

Little man has needed his medications to be compounded.  We are fortunate enough to have a few compounding pharmacy's in town.   Walgreens is one of them.   When I needed ibuprofen and tylenol, we had the Rx sent to Walgreens.  They worked closely with us on it- making sure they were not adding any compounding agents that Little Man would react to.    Next came his iron supplement. Unfortunatly, Walgreens did not have the FeSo4 (elemental iron) on stock so they graciously recommended we contact the hospital pharmacy in town so we could get the iron sooner.   This was back when his Hemoglobin had dropped to 10 after the bloody stools following corn fail and Neocate and we knew we needed to build him back up.    I requested the iron be compounded with Vit.C since Vit.C is deficient in his hemp milk formula and iron is better absorbed with Vit.C (acidic environment).  The stomach offers a beautiful acidic environment but taking iron on an empty stomach is rough on the stomach.   So, we went ahead and had them compound Vit.C with it. Unfortunatly, I did not think to ask what the Vit.C would be made from if not from corn (ascorbic acid is most often derived from corn) because they compounded it with Yucca root and this only gave us the confirmation that he is allergic to Yucca root (ie Tapioca) as this was his 3rd (and worst) reaction to tapioca -- each reaction becoming more clear, more reaction from less amount.  This reaction dropped his hemoglobin from 10 to 7 and 7 is where we sit.    He takes iron twice daily to build back up his supply, we are now out of his first Rx of iron so we went back to Walgreens to have them compound it this time (instead of the hospital pharmacy).   We picked up his new supply on Friday.  I was also able to have an informative discussion with the pharmacist when I picked it up about dosing and best times for good absorption and less stomach aches.  Walgreens has not let us down, they did a beautiful job and the iron is less harsh, less metal tasting and mixes better with the water we mix it with....little man barely even gags anymore....what a relief that is!  Trust me, the last thing you want to hear from an FPIES child is the sound of them gagging.....

Thank you Walgreens!!

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