February 1, 2013

Finding Balance: Holding on & Letting go  | Supplements and Diet
In this life, breaking a habit can be hard fought.   

Making them can be so easy.  Like falling in love.  Effortless.

You try a new supplement or diet and your child improves.  More talking.  
Less stimming.  The changes are palpable.  You could live like this!

And as days turn into weeks, something you said you could
becomes something you can't imagine
NOT doing.

But then you read someone's blog.  They talk about
stopping probiotics.

Then you chat with a friend at therapy.  They talk about adding eggs or
sweet potatoes back into the diet.  The very things you worked so hard to

They tell you their child improved.  

And you wonder.

Perhaps it's time to sort through the small warehouse of supplements
spilling over onto your counter.  Perhaps it's time to try some additional
foods.  Perhaps some of the things you're doing have run their course.

But, as hard as it was to start them, it can also be tough to stop.  And how
do you begin to know what to hold onto and what to let go?  In this month
of "love," we've decided to draw comparisons to relationships.

In love, some people are forever.  Some are transient.  Some are simply not
a match.   It's the art of classifying them and finding balance between what
to hold onto and what to let go that leads to happiness.

That same categorizing and ebb and flow can lead to success for our
children's health.   

Your mom, your sister, your best friend, your soul mate.   These people
have a planned permanence in your heart.  "Forever" doesn't mean they
can't change.  There are no guarantees.  People pass on.  Move on.  Grow
apart.   But in our unpredictable world, they are ones we plan to keep.

Certain dietary modifications (due to intolerances, sensitivities or inability
to digest) may well fall into this category.   For Caroline, we never plan to
return to gluten, dairy or soy.  Our whole house is GFCFSF now and it has
helped each of us in a myriad of ways.

Supplements are different.  It's a rare supplement that makes it into the
"forever" group.  We should continually test them and determine if they're
still needed.  Plus, simplifying our supplement lineup is rewarding.  One
less capsule to open!  So go ahead, do what we've done, throw open the
cabinet doors and start marking the bottles for planned phase out /

Sometimes we have relationships and friendships that we know won't last
forever but at the time, we need them and it works.  For now.

In healing our kids, it's no different.   We don't want them to be on "health
support" forever.  We want them to ultimately not to need any of the
supplements "typical" kids don't need.

Which is why it's critical that from time to time, we remove supplements
and test the diet to make sure what we're doing is still optimal.

A rule of thumb we use is, if we didn't see improvement when we started it
and we don't know why we're using it.... it's something to investigate and
then potentially try going without.  

Two recent changes we've made are to the Specific Carbohydrate diet and
antioxidant choices.

1.  SCD / GAPS
It's been
3 years since we started the SCD.  Venturing off the diet has been
long overdue.  But in true champion procrastinator form, not until an
urgent need comes about do we do it.

Caroline recently was sick and didn't eat for 3 days.  Of course she had no
weight to sacrifice and in the photo at right, her thinness is painful.   It
hasn't been for lack of trying.  Dieters worldwide would be jealous if they
knewhow much extra fat she'd been eating, to no avail.  

I decided an SCD illegal carbohydrate (sweet potato) might be in order to
help her put back on the pounds.  Two days ago I added it to her diet.  So
far, it's going very well.  We haven't seen any tics, OCD or yeast flares and
she's in heaven!   Present her with a plate of sweet potato fries and you'd
swear you were Chef Mickey himself.   After school she goes straight to the
kitchen to get out the pan and fry them up.  

This one can be counterintuitive.  We've been taught that antioxidants such
as vitamins A, C, E, etc... help fight oxidative stress, which is a bad thing.  
Right???    Not always.   Sometimes, the body needs oxidative stress to
trigger healing.   The oxidative stress and free radicals act like a smoke
signal, "Send healing here!!"   The body can then respond and repair areas
that need it.  For some of our kids with ongoing battles and inflammation,
we might be squelching the call for help.   

For Caroline we're working to remove all unnecessary antioxidants.  So
far,she's doing better than ever.  The last 3 weeks, two of her therapists
have remarked how noticeably improved her spontaneous language has
been.   You can learn more about free radicals and antioxidants from the
links to  the right.

The one that got away.  Someone you shared an intense connection with
but as much as you wished it was, the timing simply wasn't meant to be.  

These supplements and dietary changes are ones you may need to shelf,
but keep in mind for when things change and possibly the time becomes

For Caroline, an example is Low Dose Naltrexone (LDN).   Several years ago
it brought about what I always refer to as a social miracle.   She had two of
the best days in her life.  Even greater social awareness and use of language
than we have ever seen since.  What I wouldn't do for a video.  But at the
time, we thought it would last.  

We didn't realize that not only would we lose the best she's ever been, it
would be followed by 2 weeks of close to no sleep and terrible regression.  

Ultimately, we need to try it again.  Something so powerful doesn't cross
our paths often.   And yes, it's a scary proposition.  One we've been
ignoring for some time.  But the potential upside is incredible and this
time we know what to look for and hopefully will avoid any regression.  

Maybe it's the date who told you about his reptile collection as the
conversation dragged on and on and on.  Or the friend who gossiped about
you to the whole town.  People who add no value to your life.  

I hardly want to brand any supplement or diet so terrible as iguana guy.  
Especially since every child is different.  I will only say that when you decide
something is never to be repeated, take copious notes so you remember the

After that, don't toss it.  Just like a "bring an old boyfriend" mixer party, the
Recovering Kids group has Supplement Swap Sundays and you might find
you can use it to trade up for a much better match!     ... with full disclosure
of course (don't forget to mention the pet lizards).

We've reached a point where we're carefully considering the choices we've
made in the past three years.  Holding on to many.  Letting go of some.  
Planning to revisit others.  Witnessing firsthand that the decisions and
sacrifices have healed her to a point where we can pull back and she
doesn't fall apart.   

It's a goal we've had for a long time.   We haven't accomplished it fully.  No
pizza parties are on the horizon.  But we're clearly moving in the right
direction.  And for that we are most grateful.

That and sweet potato fries.
For future blog notifications:
December 2, 2012
January 27,  2013
Caroline making her favorite after school snack,  
sweet potato fries.