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, March 29, 2011

If this cold would ever go away....

It's making me many memories of last winter when it was cold after cold and so many of his symptoms of reflux, spitting up, clingy, crying, disturbed sleep, decreased appetite, low grade fevers, runny nose, barky/wet coughs were being dismissed to the cold....but I just knew it had to be more.   I didn't know what, but my instincts told me there was something connected to his many intolerance's and these repeated viral illnesses. 

Little man is fairly healthy....well, except this whole FPIES thing.   It is thought that FPIES is an over-reactive immune response; so it does make sense that many FPIES kids are not often sick with a virus as their immune systems are attacking simple food- of course it will attack a virus.  

Big brothers are always so thoughtful, and we do teach them to share- so our 3yr.old thought it would be good to share his cold with his little brother.    But, just when we think we are seeing the tail ends of it- symptoms come flooding back.   We have been trying to do more probiotoc trial (2nd strains) and a banana trial....but with this cold- things are so "muddy"!  So, we suspended the banana, and the bifida probiotic.  

This morning, I sent Dr.J a quick e-mail (hoping for those result interpretations soon!) about these cold symptoms- and my worry surrounding them.   Her reply was very insightful....and I want to share it here because it is comforting that it is something so many moms (in the babycenter community) have also attested too.  Food trials are suspended when a cold presents, food trials are suspended with vaccines, with fevers, any sign of illness or an over active immune response and food trials need to take a back seat....or the picture will be muddy.  

Her response was: "I think that you should wait for several days until his cold symptoms resolve. When you have bad viral syndrome which generally provokes systemic immune reaction, it is expected that body's reactivity to food will get worse. I would continue lactobacillus but wait for a trial of new things". 

She has also encouraged us to switch probiotics, staying with Kirkman's line but switch to the Pro-Bio-Gold

but only after his immune system from this cold calms down....I've ordered it and waiting on it's arrival, as well as the cold to disappear completely.   But, mostly I am waiting for those interpretation of results!  The initial results she gave me were very interesting and some good information but without the reference numbers to the chart, or her full experienced interpretation- we are still missing something and not quite sure how to proceed into next steps.    

So, we wait...patience is the name of the game in FPIES world!


  1. Hello- I have a 7 month old who was just diagnosed with FPIES last wee. We have been battling this since she was 2 wks. At 7 wks she was diagnosed with Milk and Soy allergy. Everything we have given her she has reacted too. She can't eat the following, Milk, Soy, Oats, Rice, Peas, Legumes, Carrots, Apples, Squash and Chicken. We aren't allowed to try anything else at the moment. I saw where you were trying probiotics. She is on Culterelle for kids. They are allergy friendly. Our blog is I am still learning everything.

  2. I am doing a probiotic, it really has seemed to help with a few things. We do Kirkman's labs as they were the most hypoallergenic that fit my little guy's allergys. I know many other kids are doing well on Culturelle as well!
    I added your blog to my bloglist of FPIES I recognize you from babycenter?