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."

Wednesday, June 13, 2012


Little man got his IV iron infusion 2days after his 3rd birthday at the PITC (Pediatric Infusion Therapy Center).  It is a 6hr.infusion because the iron has to be infused with a sugar- sucrose or dextran.  We've tried the sucrose but that has given him bloody stools.   FPIES is defined as a delayed food allergy of the gastrointestinal tract, so doctors often struggle that allergens via IV or on the skin, or even airborne, could cause reactions.   We've seen them all when he is exposed to corn.  It makes me wonder if he will ever outgrow his corn allergy.....  We keep learning as we grow with it, on ways he is "corned" (as it is called in the corn allergic communities).     Did you know that many corn allergic can never go to a movie?  or shop at Target?  Or walk through the detergent isle in the stores?  The strong corn smell is too much and induces an allergic reaction.   I think I've seen these in him instinct tells me I have....but I'm still trapped in that "that is crazy" feeling fighting my instinct.   This past weekend, hubby bought some scented laundry detergent- which I have been avoiding but didn't tell him that- Little man's color was very pale that evening as the house was engulfed in fumes from the laundry scents.  Today, his color was off again - he hasn't eaten anything new- but hubby used some strong cleaner on some stubborn spots on the living room floor and also on the kitchen sink.     

Now, most of these reactions don't completely interfere with his quality of life and can go almost undetected (hubby doesn't notice them like I do); but it is hard to differentiate if the symptoms are from a new food we are trialing or being "corned" so we have to be careful --- even if it isn't going through his gut. 

So, the IV iron sucrose is a 45minute infusion...would be so much easier if he could have that but it is not safe and the benefits do not outweigh the risks.   The IV iron dextran produces symptoms but they are manageable and the benefits of the much needed iron outweigh the risks of corn-tamination from the IV dextran.  But it's been a long week....working that dextran out of his system is taking a long time.  He isn't sleeping well (won't even sleep in his bed), has stomach aches, doesn't want to eat but will take his bottles (thank goodness), is tired a lot- achy maybe? touchy and moody.    Over the week, we played the guessing game- did he get something, is it from this or that, is this getting worse or better, is his iron still critically low?  But now it is clearer to see that it was all from the dextran and I'm feeling de-ja-voi, that we've been here before and even discussed it with the GI who agreed that we need to try and avoid the IV iron (ie, not let his iron stores get so low so that he needs it).   But with a Ferritin of 2 (normal is 24 and up), we had no choice unless we did a blood transfusion.  

We got to the PITC and Little Man knew exactly where we were....and wanted to go home.   He was very brave though and got distracted by watching "Cars" while we waited for the lab to show up to get his IV started.   We were happy to see one of our favorite nurses there too.  We were giving her an update on how he has been (they love to see how much he has grown and changed!).  She was talking to him and trying to distract him as they got the IV ready and he had his SuperMan pants on (pants with a patch) and she asked if he was Superman.  I told her how one day, he looked at me and said "Sam Ironman, me Ironman?" ;)   She thought that was cute too...and replied...."well, today he is".   

The day was long but hubby and I split the "shift"- I take the first hours where he gets the IV and gets settled in and then hubby takes the rest, where they can play and nap and get through the long 6hr.infusion.

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