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."

Thursday, October 21, 2010

The Reality....

There is a reality to FPIES, to our FPIES, that I often do my best to hide.   Why do I do that?  Maybe because I am optimistic, maybe because I try to always stay positive, and patient, maybe because I think it is pointless to blame someone for what my son was born with, maybe because I know life is too short to waste on regrets and 'what ifs', maybe it's my Faith.  But maybe it will help to just once discuss the bits and pieces of this reality - just once let some out in the light.  Of course, those who know me well enough know the reality well but many don't.  I have a very close friend that has been by my side every step of the way through this, every.single.step.   And she said to me one day that she did not even know how bad it really gets- had barely ever even heard Little Man have one of his agitation cry fits (we mostly were just talking on the phone at that point, being too busy for much else), and certainly had never witnessed one of his reactions.   My sister, A., lived with us for awhile and before she witnessed them- she could not have imagined it either.  She became very attuned to them and would be at my side immediately..."what do you need me to do?"  

The reality is that little man has been sick for most of his life.   He had FPIES ravaging his body before we ever even heard of such a terrible thing.   Maybe if I had recognized it sooner, maybe if I had ever heard of FPIES, maybe if the doctors had ever heard of FPIES -- if it had been in the differential diagnosis for the pediatrician in the early stages, or the GI or Allergist when his weight fell from 80th%  to 40th% down to the 11th% and required a hospitalization to get his nutrition back on track.  Unfortunately that meant taking a new track that only continued to worsen his nutrition and cascade his illness -- being that no one knew about FPIES and it's extreme sensitivity to trace proteins....even trace proteins in breastmilk and elemental formula's.   It is a bizarre illness, but it is real.  The reality is FPIES allergy's are severe and sensitive and these children do react to trace proteins - in breastmilk, in medications, in corn syrup solids and soy oils in formula. 

The reality is that all food is "poison" in our house.  The reality is that there has way too much crying and not enough happy moments of calm and routine that kids can thrive on....that I strive to provide for my children.  The reality remains that meals in our house are more of just the "hassle" of 'what's for dinner'- it is trying to cook with a toddler seeing and smelling the food he can't have, the reality of how many times I would normally use a cracker or a fruit cup, a cheese stick as a distraction for my other boys, while I cooked dinner.  For little man- I let him dig through cupboards.... The reality that eating a meal as a family is more of a rare, and rushed occurrence, than the normal for us anymore; and more often than not- one of us takes Little Man out of the room and distracts him downstairs.   The reality is that I do not even have a bath soap that is safe to wash him with.  That he is up at all different hours of the night - and I have no idea why, should I be worried?  Is he having a reaction to something?  This is where it all started at just 10days old when 2am was his 2hr.-wide-awake time....he's doing it again and besides the fact that I am so extremely over tired, I'm worried about what it means. 

The reality is that his iron status has always been low, his Vit.D was profoundly deficient the first time we checked labs on him when he was 6mo. one had any idea why....I had my suspicions- instincts that were right on about his gut inflammation.  His chronic inflammation kept him from absorbing good nutrients, even while breastfed.  His beginning of blood in stools following corn fail dropped it even more, his vegetarian diet of hemp milk had difficulty replenishing his already low stores, and then more blood in stools.  The reality is that because I will not allow him to have the elemental formula that continued to make him sick for 5mo.; I am now getting blamed for his poor nutrition labs, his low iron, his weight gains not being more....despite the fact that I have been looking for help for his FPIES and to stabilize his illness for months. The reality is I don't want to complain about things I can not change, but I do want to change the things I can.

The reality is that his anemia is scaring me.  That it is just one more thing in his complex illness to worry about, to wonder, and want to know, what is going on inside his little body.   That, when he starts to get overtired, or his heart starts to race - I worry.

The reality that when he starts to cry and I don't know why, I worry and I begin to panic- what did he eat, what is he reacting to, now long will this last, will it get worse, how is this affecting his brothers well-being?  That when he won't eat enough of his formula to gain weight- I begin to panic.  That when he won't even let a new food touch his lips, I worry about how he is going to get a well rounded diet when he won't eat, much less try, the new foods.

The reality is I want to trust my instincts, and knock out some food trials....of things like eggs, almonds, white potatoes, coconut milk, avocado, banana, beef, lamb, quinoa, mango, peaches, apricots, carrots, squash.  But if we're already getting blamed for his illness and his nutrition state because of it....if he gets sick from these food trials (that of course we would do in a very slow trials)- how much more blame can we carry?  The reality is, I feel trapped.  Between a rock and a hard place -- this whole journey has kept me between a rock and a hard place. 

The reality is - I just want him to be the best he can be with this chronic illness.  I want him to have what every child deserves- a good quality of life.   And in that, I want that for my other boys as well....if little man's illness remains so high needs- it is difficult to give them that also.   My focus is my family....Little man has required much of my time and energy over the past year.   The reality is, there isn't anything, I wouldn't do for him.  This is (a little bit of) the reality with a FPIES child, in our family.


  1. Joy, I am crying. This reality is so taxing - every moment of every day on every family member - and you have put that so perfectly into words. Your struggles far surpass ours and so we do again what we always do... send hugs and prayers.

  2. Perfectly said!! I'm in tears reading the reality of it all so clearly spelled out. I especially appreciate the part about people not knowing the full scope of how bad it really is, until they experience it first hand. Thank you for sharing!!

  3. Thanks for such an honest, heartfelt post. I, too, am in tears. Even at our "worst" FPIES-wise, though, our DS never has such a hard go of it. It breaks my heart that your LO is still suffering this much.

    So, as "Mom of Two" said so eloquently, hugs and prayers are coming your way.