Saturday, October 27, 2012

Outgrow: an FPIES reflection

I'm a literalist. When it comes to the sharing of facts I find it completely frustrating when information is obscure, misleading, or not entirely clear.  For this reason, and many others, it did not take long on the FPIES journey for the phrase 'outgrow' to make it to the top of my list of pet peeve's.

Most do outgrow, will likely outgrow, might outgrow, probably wont outgrow, may never outgrow,...are all phrases I have heard, and phrases I loathe.  Why such passion for such things, you ask?  It's simple. What in the heck does 'outgrow' mean?  It's obscure.  It's misleading. It's unclear. And when dealing with a sick child, it is hope stealing.

Children outgrow the terrible twos, and they outgrow being afraid of the dark, and they outgrow the need to talk on the phone.  They don't outgrow barfing, or reflux, or diarrhea, or failure to thrive, or any other sign that something is wrong.

In less flattering times I have retorted sharply when an inquiring mind wanted to know if 'this is something she will grow out of'.  Well no, I have responded.  It won't just magically disappear, but we do hope she will heal beyond these limitations. oops.  Not my finest moments.

In less than complementary conversations, I have mentioned to medical professionals how irritating it is that there is no definition for what 'outgrow' truly means.  They throw it around as if it gives an answer, when it really says nothing.  They, of course, have had their various explanations of how sometimes the immune system or intestines or whatever just simply heals on it's own or grows past this struggle or matures to a certain place or begins to whatever.  Like a miracle? I wish I had asked.

I have my own definition:  doctors and society use the phrase 'outgrow' to mean something that may at some point in time stop and no one knows what, how, or why.

WELL....I'm a what, how and why kinda gal.  As in WHAT is going on medically, HOW did it get that way, and WHY did it change, go away, or stay the same.  It's kind of like how curiosity killed the cat.  I am certain this feature of my personality will be the death of me.

Indeed miracles happen and many of these situations may be just that - an unexplained miracle in the medical community.  But many times it is truly that they just don't know the reason or have not made the connections.  It makes me so sad that there is an abundance of information about immune system disease, and how they ALL can be healed or at least dramatically improved, yet the medical community in general continues to stay within their little boxes of no hope and outgrow.

These are not helpful explanations.  These are non-explanations.  And here is my response:

Never accept 'that is common' or 'they will outgrow it' as an explanation for your child being sick, hurting, or showing signs of distress.  

Ellie is now 3.  She has won the sickest kid award in just about every competition we have unwillingly entered. And today she is a marvel.  She is eating, she is thriving, and she is saying good bye to all of those symptoms that once puzzled even the best.  

She is not outgrowing FPIES. She is healing. And there is hope for even the most hopeless.  How do I know?  Because I am an expert. I was there.  I was one of those moms. At the very worst we heard 'expect her to at least be on only elemental formula well into her school aged years'.  

I thank Jesus every day that one doctor half way across the globe took the time to answer a very obnoxious and lengthy email from one desperate mommy of a dying child.  I thank my God every time I look at my girls and know what our new normal will do to create a legacy of hope for their future. And maybe someday their story will be common, and hope will be found for so many more. Until then...

"you teach, you teach, you teach!" Dr. Weston A. Price

3 comments:

  1. I would love to know the name of that sole doctor that was kind enough to help because right now we are right where u were and my child is 2...

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    1. Dr. Natasha Campbell-McBride :) She is the author of GAPS and you can find out about her at gaps.me. Additional information is at gapsdiet.com, and there is a support group of families raising kids on GAPS at GAPSandKids.com. I am sorry to hear that your child is so sick. It is a very exhausting and hopeless place to be. GAPS is a healing diet that can be very individualized and therefore extremely successful. Have hope!

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  2. Amen! Since being on the diet my child has changed and grown so much for the better - several times I hear - oh he just had to outgrow it;)

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