August 1, 2011

A bed is made, recovery is closer
One of Caroline's therapists has been working with her on independent morning routines
-- getting dressed, brushing teeth, making her bed.  (Giant thank you to Reanin!)

Yesterday, after brushing her teeth, she ran into her room to make the bed all by
herself.  WOW.  No matter that the sheet was on top of the blanket, this was a HUGE
step for her and she was really proud.

This weekend, we were chelating, which means sleep was lacking, but everything that
matters was improving.  Her focus, task completion, eye contact, language and mood
have all been remarkable.  And while she's still unable to have a back and forth
conversation, we did have an exchange that went like this:

Mom: "Do you want pears?" (offering a plate of cut pears)
Caroline: "Yes. Where is the fork?"          [note: we're rid of the "it" from "Where is IT, moon?" !!]

Mom: (shows fork but does not offer it)
Caroline: excitedly  "I found it!"
Mom: (lol and still holding the fork)

Caroline: "Can I have it?"
Mom: "Yes!"
Caroline: (Eating) "Mmmmm, delicious!"

Mom: "I love you so much"
Caroline: to the tune of La Cucaracha "I love you so much, I love you so much, la la la
la - la la la la!"

While chuckling, I started to think about our chelator (Alpha Lipoic Acid, ALA) --- and
how it's been our heaviest hitter in the recovery journey --- and how inexpensive it is ---
and then my thoughts wandered to how actually the two biggest things we've done
(specific carbohydrate diet and low dose chelation) don't require a doctor and aren't
expensive.

Soon I was wondering how many parents (including us) tend to subconsciously measure
a treatment by it's popularity or cost and miss some very effective, lesser known, initial
"interventions."

Are we too often putting on the blanket before the sheet?  

With a few things we certainly did.  Hyperbaric Oxygen Therapy (HBOT) was one of
them.  It's "popular" and we saw nice gains, especially in language and decreasing
anxiety -- but with the expense and time commitment it takes, it typically should not be a
'frontline' treatment.  Meaning, you can get bigger bang for your buck.   

In an attempt to help others follow a route to recovery that's more efficient than the "trial
and error" journey we sometimes took, I offer this advice:

Put the sheets on first

Recovering a child from SPD, ADHD, or Autism is not about keeping up with the
Joneses. Don't concern yourself if little Declan's family got a shiny new Hyperbaric
chamber or is doing the highly acclaimed mb-12 shots, you need to do what's right for
your child and your budget.    

The fitted sheet

You've heard it before "the diet is the foundation to recovery."  Of course, it's not what
we want to hear because changing a picky eater's diet
= hard work.  A lot harder than
stretching on even the snuggest fitted sheet -- the impossible one you swear is the
wrong size.  However, it can be done and is critical in laying the groundwork for the other
treatments that follow.

With the array of diets to choose from, each promising different levels of results - there
might be an modification that will improve your child's behavior, attention, language,
sensory issues that you haven't yet considered.

The options range from the starting digestive enzymes - which can help digest gluten
and casein - to specialized diets that will chain you to your kitchen but bring about a
whole new level of complete gut healing.

In Caroline's case, we began - toe in the water, with digestive enzymes prior to GFCF
and saw gains positive enough to make us motivated to try the actual diet.  Enzymes with
DPPIV will help your child digest gluten and casein and can give you an idea if your child
will respond to actual dietary changes.  A great site to learn more about how digestive
enzymes can help kids and adults alike is:
ENZYME STUFF.

The next step, of course, is the generally the highly touted
GFCF diet, with Soy often
additionally eliminated since soy proteins are a lot like gluten & casein and also the
phytoestrogens in soy make it not a good choice for developing children - especially
boys.

If you've tried GFCFSF and either didn't see results, or saw results but want more,
OR if you haven't tried it because, well let's face it, gluten free is expensive, then you
may want to consider the
Specific Carbohydrate Diet / GAPS.  Since this is Caroline's
diet, I have a special page for it along with the top 5 reasons to consider it
here.  It's
gaining popularity since it's been rated the
#1 autism recovery diet.


The flat sheet

If I could turn back the clock to the point just after we started the diet and some initial
(first tier) supplements -- such as vitamins,
fish oil and Behavior Balance, I would've
started Andy Cutler's low dose (safe) chelation at that point.

In real time, we first tried fighting yeast, mb-12 injections, fighting viruses, HBOT, fighting
bacteria, fighting yeast again and on and on.  Now, however, I know that chelation is
necessary before you're ever going to win the war over yeast, bacteria or viruses and is
also important to do
before HBOT (some believe the pressure can drive toxins and
metals further into tissues).

So, what is Andy Cutler (AC) Chelation?  

You may have heard about chelation therapy (using chelating agents to remove metals
from the body) but you probably haven't heard of AC Chelation.  The chelation often
criticized is IV Chelation and they are not the same.
           Andy Cutler : IV Chelation
                   Drizzle :  Monsoon
Typical dose ~  5-10 mg : 3,000mg

AC Chelation uses extremely low, frequent doses to gently remove metals from the body.
Removing metals is important because most of our kids with neurological impairment
have poor detox systems and can't rid toxins and metals on their own.  

The primary chelating agent AC chelation uses is Alpha Lipoic Acid (ALA) which is
inexpensive can be purchased at any health food store.  Hands down, it has gotten us
farther than any other biomedical treatment.

In fact, even Caroline's DAN doctor has said "the only thing that's going to drive her
recovery home is ALA."  While that's very validating, you don't need a doctor to do this
type of chelation.  All you need are instructional websites and to join a good online
parent support group such as the
Recovery From Autism yahoo group. (editor note
7/2012: updated group on Facebook:
Recovering Kids | Cutler Chelation)

AC Chelation, like the SCD, boasts extremely high success rates.  I haven't heard of
people not reporting gains or choosing to stop AC chelation because it didn't work.  It's
the kind of thing that once you do it, the light bulb goes off and you realize, this is it!  
The veil that clouds your child's world starts to lift and you know you're doing the right
thing.  

If you want to learn more, I recommend you read
Andy Cutler Chelation Protocol (my
blog with a step-by-step guide)



The Rest of the Bedding

After you consider different diets, initial supplements and low dose chelation, then I
whole heartedly recommend all sorts of (second tier) supplements, mb-12 injections,
antivirals, HBOT sessions, neurofeedback, many of which can be done simultaneously.

Along our journey, I've learned from our mistakes.  I know now that sometimes the best
treatments aren't the most popular.  Often times it's because they aren't big money
makers, so no one is "marketing" them.

You will find though, that what they lack in publicity, they make up for in steadfast
followers who will welcome you with open arms and show you the ropes.  These people
will become not only your guides, but also your friends and the first ones you'll turn to
when you have amazing news to share about your child progressing toward recovery.

What I hope to leave you with is this.... When you're elbow deep trying to stretch a sheet
that feels like it will never fit and you hear about other treatments -- some sounding
easier or more glamorous, most costing more money -- don't give up, because laying a
solid foundation for recovery is the most important thing you can do.

Pay attention to the highest
parent rated treatments.  Don't worry if they're the not the
latest craze or are surprisingly inexpensive.  Someday your beautiful quilt will be proudly
displayed and it may happen sooner than for people who lay it down first and then have
to put the sheet on top.  Unless, of course, they're five - in which case it's kinda cute.
Made the bed all by herself.   The sheet on
top of the blanket was how she thought it
would look best.
Dietary modifications are much like climbing a
ladder, there's always a "next rung" that can
bring a whole new level of improvement.
Removing metals and toxins is opening up a
whole new world for Caroline - she's more
aware of her surroundings, has better
attention, increased comprehension,
significantly better eye contact, improved
language and the list goes on...
autism spectrum blogs
Please Note: It has been hypothesized that
HBOT can "drive metals further into tissues"
making them harder to remove.

An important reason why some people
believe chelation should be completed
before HBOT.