How This All Started

Below is a blog post from April 27, 2013.  The short story is, my seven year old has been battling chronic constipation to the point that it was impressive to the GI Specialists we saw after 2 years of trying to manage this with our pediatrician.  It was severe enough for a long enough period of time that her bladder was working so hard against the pressure of her bowels that her urinary system is out of whack, too.  But it didn't end with getting to the pediatric GI specialists; it improved temporarily, then worsened again.  The end point was finding an integrative medicine specialist who made a huge difference in her life.  Through her, and some crazy weeks of dietary restrictions, we discovered that Emory's GI system reacts to corn and peanuts.  Peanuts are pretty easy to avoid - the FDA regulates labeling for peanuts....not corn. Corn can be hidden in anything and no one is forced to tell you about it.


Nearly two weeks ago, we finally met with someone who has made a significant difference for Emory's GI issues.  It required a big leap on my part, but it was nothing that can't be managed with some deep breathing, a lot of label reading, and willingness to try new thing - for both of us.  (It also made it painfully obvious that I need glasses - which I picked up yesterday, and my eyes are happier now!)

After too many years of ongoing GI problems, the details of which I will not go into here, being told "She's just one of those kids."
"She's just a tough case."
"Just increase her Miralax."
"Some kids just *need* these cleanouts every 4-6 weeks." (meaning a liquid diet for a day, 2 ex lax squares, and 8-16 capfuls of Miralax, and the only real food allowed is breakfast.)

Being placated when I expressed concern about why her symptoms are worsening instead of improving after ingesting THIRTY large bottles of Miralax in the last year.  Yes.  THIRTY.  And that might be a conservative estimate, sadly.  The real slap in the face came two weeks ago when we ran out of Miralax, and BOTH of her monthly prescriptions were not quite ready for refill.  That's 60 doses of Miralax in less than 30 days.  "That's impossible!" I thought.  When they double checked  and offered to run one of them to see if it would go through, I turned the corner and cried.   I had suspected that things were getting worse, but this was confirmation that despite ALL this Miralax, she was still having more and more problems controlling things.

Here's the other option:

We could schedule anal-rectal manometry to see if she has Pelvic Floor Dysfunction.

Google "anal-rectal manometry", and see if you'd want to put your 7 year old through it.  With the end result being, "Well, she's too young to actually do anything with the information, but you would have an answer."

I'd had enough, and I was willing to try anything.  ANYTHING.  We talked about alternative medicine and chiropractic medicine.  Some people will attest that either one could help.  In my mind, chiropractic medicine was a bigger stretch, so we searched for an integrative medicine specialist with pediatric training.  We found a few, but insurance coverage is limited, and some of the stuff they do is a little, ahem, out there.  Finally, we found a traditionally trained pediatrician who decided to take a slightly different route at the Integrative Medicine clinic at Duke.  Fortunately, she had an opening within a week. I was counting the days until we could see her and hope for something helpful to come of it.

Her suspicion is Leaky Gut Syndrome, which was previously considered a diagnosis "on the fringe," but it seems to be becoming more accepted as a real issue.  The treatment:  an anti-inflammatory elimination diet.

No corn (or its derivatives)
No gluten
No soy (or its derivatives)
No dairy
No peanuts
No eggs
Only unrefined added sugar (rapadura, birch sugar, and one other), not more than 5 g per serving.

Guess what they use to substitute for gluten?  Corn and Soy.  :)

Cutting out any one of these things would be a task - cutting them ALL out at once has been a big challenge.  It has been incredibly eye-opening to see how pervasive corn and soy are in our foods, corn ESPECIALLY.  Sadly, going organic doesn't necessarily change that fact, so just shopping at Whole Foods does not reduce the amount of label scrutinizing that must be done.  Corn derivatives are widely found in things we consider to be healthy, even the organic brands:  100% juice, yogurt (even coconut milk yogurt), salsa, canned tomato name it, it VERY likely has a corn derivative in it.

"Natural flavoring"
"Vegetable broth"

Corn - unless you can confirm with the company that it is not corn-derived, which they may or may not be willing to share because it is considered "proprietary information."  Nice.

Ascorbic acid
Citric acid

Also very likely derived from corn.

The list I have is 2-3 pages long- just for corn!

So, unwilling to back down from a challenge, I have learned a lot the last two weeks.  It will make me rethink the foods we eat beyond this temporary diet, especially corn in light of the push for GMOs.  I have learned to make kale chips and sweet potato chips - which are delicious, by the way!  Emory loves them, and she is surprisingly appreciative of my efforts to make foods just for her.  Dinner is for everyone, but I just use small substitutions for her at breakfast and lunch.

And guess what.

After three days, we started to see positive changes.

After one week, things have changed very significantly.

We have reduced Emory's daily Miralax dose to less than half of what it was two weeks ago.  I don't know if I have EVER been able to consider reducing it since we've gotten on this train a few years ago.

She is sleeping better - not waking up for a bathroom trip in the middle of the night - and there are other symptoms that have changed that I won't expand upon here. :)  We have a diary where we are tracking a variety of symptoms though.  But I have to say, the sleep alone is huge.  Her temperament is not (generally) as intense.  (i.e., we are having fewer tantrums, less sassiness, less argumentativeness.  is that a word???)

She is being such a trooper, and I am incredibly proud of her.  She has tolerated so much for so long.  And this is all it took - or so it seems thus far.   I don't know how many times I have asked "Should we take something out of her diet?"  I think there is something to this mother's intuition; I have been right about her all along with these issues.  

So, in a week in a half we begin the challenge weeks.  Each week we will re-introduce one of the ingredients at a time for four days.  You can see a response up to three days after ingesting a trigger food.  After four days, we will take that ingredient out and begin again the following week with another ingredient.

I think we will find something, and I am REALLY curious about which ingredient is the culprit.  This may be a challenge, but it is so worth it already!  Depending on her response, we may not have to cut the ingredient out entirely, but we may have to limit it and know that when she has it, she may not feel so good for a few days afterward.  We will see how all this unfolds!

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