Pain Tolerance in DS

Paul Doney has compiled a fascinating bit of research and anecdotal evidence about the role of Ginkgo Biloba in normalizing pain responses in Down syndrome.

Normal pain response is a gift.  Pain tells us to remove our hand from a hot surface.  It convinces us to stay off a damaged ankle so it can heal.  And it alerts us to sickness so we can take corrective action.  As much as we hate pain, we must realize that the absence of a normal pain response is dangerous.

Therefore, this is good news:

The main conclusion that I would TENTATIVELY draw from all of the following is that Targeted Nutritional Intervention, and in particular the supplementation with Ginkgo Biloba, MAY normalize or improve the pain tolerance of a child as well as “wake them up” from a more sedated state.

Paul details his research and evidence at Super Down Syndrome.

14. Start Ginkgo Biloba Now

The world of Down syndrome is changing.  In my opinion, babies born today will grow up to resemble little of the “syndrome” identified by Langdon Down—if their parents take advantage of the most recent research findings.  This is a big “if” because it is up to the parent to seek out the research findings and not wait for the established support organizations to catch splash7rzup.

I’m going to try in just a few paragraphs to explain a very complex concept in recent research.  You see, the brain doesn’t just have a mess of neurons firing at random.  Instead, there is a perfectly designed system to tell neurons when to fire, and also to tell them when to quiet down.  You can picture it as a busy downtown maze of streets, and with a traffic lights over the various lanes, telling the cars when to go.  If your light is green you go.  When it is red, you stop.

In 2004, research found that the neurons in the brain of the genetically modified DS mouse fire just fine.  So what’s the problem, then? There is too much of the neurotransmitter (more…)

Treatment Messes with the Essence?

Do we love Down syndrome, or do we simply love our child who has Down syndrome?  If we treat the syndrome, does that mean that we are rejecting the core identity of our child?

One of the most common objections to treating Down syndrome is that the child’s essence would be changed.  For years I’ve heard this regarding treating with targeted nutritional intervention.  “But I love my child just the way he is.  I don’t want to change him.”  Nowadays it is a concern regarding any treatment which would result in improved cognition or neurogenesis.

My daughter Grace just addressed this objection with her usual insightful commentary.  The whole post is worth reading, but her thesis is here:

But changing Mary’s future doesn’t change who she is. That Mary isn’t made yet. As we treat her brain, she will have new experiences that shape her. She’ll grow. But her identity won’t be distorted, because she remembers those struggles. Everything she ever tried to learn, say, or do, and couldn’t is a part of her history.

We’re adding to Mary, not subtracting.

In her post Grace itemizes some of the changes she has seen in Mary since we began the fluoxetine (Prozac) over three months ago.  Her observations are different from mine.  She uses these examples to show that Mary’s essence has not changed, even though her abilities have.

Brain Growth on Changing Minds Protocol?

Today I received an email from a mom (I’ll call her H.) who has had her daughter on the Changing Minds protocol for the past year.  She reports some very encouraging data about her daughter’s increase in head circumference.  She has given me permission to share this data with you.  First H quoted Merck to explain the normal rates of head circumference growth:

Head circumference reflects brain size and is routinely measured up to 2 yr. At birth, the brain is 25% of adult size, and head circumference averages 35 cm. Head circumference increases an average 1 cm/mo during the 1st year; growth is more rapid in the first 8 mo, and by 12 mo, the brain has completed ½ its postnatal growth and is 75% of adult size. Head circumference increases 3.5 cm over the next 2 yr; by age 3 yr, the brain is 80% of adult size, 90% by age 7 yr.

This means that head circumference shows a rapid increase, and then levels off.  A picture would show a rapidly rising line, and then leveling off by about age three. Here is a chart of average head circumferences in Down syndrome. H. went on to give her own daughter’s data.

With that in consideration, here’s what happened with my daughter:

  • at birth, her head size measured around 36cm.
  • Age 1: 45cm
  • Age 2.5 – 3.5: 47cm
  • Age 4.5: 49 cm
  • Age 5.5 – 10.5: 50cm (puberty started at age 9)
  • Age 11.5: 54 cm

head-circ-ds

I’ve plotted H.’s data (violet) on the DS growth chart.  Click on the thumbnail for the full picture.  You can clearly see the leveling of the average growth, as well as the leveling of H.’s daughter’s growth.  The child increased only 1 cm in the six years from age 4.5 to 10.5 which clearly shows that her days of rapid head growth are over. Here’s more data on average head circumference going into adolescence.   Scroll to Table 5.2.  which shows the greatest growth is in the first three years of age .  From age 6 to 12 the average child takes three years for only one cm of growth.   So what is the big deal?  This:

Her head grew in the last year almost as much as it did in the prior 10 years.

In one year this child’s head grew 4 cm.– at a time in life when it should have taken three years to grow 1 cm.

Hmmm…..why?  As I said puberty had started 2.5 years ago, her height and weight shot up, which is indicative of that.  So it stands to reason her head should have grown also, but it didn’t.

The head didn’t grow even though the rest of the body was growing.  Then suddenly the head began rapid growth.

So what changed? The only thing different….my daughter started in Oct. 2007 the Changing Minds Foundation protocol.  Could her brain have grown?!  New brain neurons?

The CMF protocol is here.  The key components are gingko biloba which is a GABA antagonist, and prozac for neurogenesis.

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