Saturday, June 15, 2013

Living in a FPIES Fog

When you live in the world of FPIES you live in a fog of uncertainty, it makes no difference whether it is your first child or you’re fifth.  This illness changes all the rules leaving parents only to guess, and second guess every aspect of caring for their children.  Seemingly natural decisions become painstaking for the parent of a child with FPIES.  Because trigger foods can be different for every child it is almost impossible to predict reactions.  Some children react from a single exposure and some after many... some have only one trigger while others have no safe foods at all… some have chronic reactions, some have acute while others have both..... 

We have to sort through the everyday things to figure out what is a reaction and what is a baby simply being a baby.  Sometimes babies cry just because they are tired, sometimes baby spit up for no reason, sometimes babies have odd diapers or get viruses.  But IF those babies have FPIES then all of those symptoms could mean the beginning of painful reactions to the foods they have ingested.  So it is up to us parents to sort through it all and care for these special little ones... desperately trying to minimize as much pain as possible.   We walk a fine line, teetering between over reacting and under reacting to our little ones needs.

When and what we feed our children become crucial decisions that could have costly consequences.  It is as if we are walking through a mine field while wearing a blind fold.  We learn to trust our instincts because that's all we have to give as protection for our little ones.  And sometimes that isn't enough!

So before you judge us please understand something..... it may seem like we are over reacting to a little spit up, frantic over a seemingly harmless crumb on the floor, obsessed with our infants bowel movements or overly concerned about a crying infant.  But what you don't know is that we have spent sleepless nights caring for a child that is hurting so badly that they can't rest, we have watched a crumb turn our little ones insides out, and held a limp and listless little body in our arms...

We desperately try to blindly navigate through the Fog of FPIES the best way we know how, but there are no rules, no guidelines for us to turn to or steer us through this journey.  We count mostly on the encouragement and experiences of others that have walked this path and we seek comfort in our small numbers. 

So many have worked extremely hard this year to help create managed care for FPIES.  Public awareness is crucial!  Recognition will enable us to bring light to this illness, opening up opportunities to develop research so we can begin to lift the fog and give our little ones a brighter tomorrow.

For more information about FPIES go to
http://iaffpe.org/        or             http://fpiesfoundation.org/

Isaiah 26:4 Trust in the LORD forever, for the LORD GOD is an everlasting rock.

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