Over and out with autism

Hindsight is 20/20, isn't it?  Not that I didn't know what was going on when we were shuffling through treatment after treatment and witnessing which had the propensity to heal our son from the symptoms we called autism and PANDAS. But now that I am reading through research and looking back at the very vivid image of what was, I can see it so clearly now!

Our son, who is now 13 and recovered from both autism and PANDAS (well, PANDAS is more of a remission sort of thing) began life a bit rocky.  After 13 hard hours of labor, he was viciously sucked into the world and out of my womb with two attempts of each, the vacuum and forceps.  It was so vicious in fact, that he was left with a severely misshapen head for more than a few days.  We were so excited to meet this little dude that we didn't blink and eye, we were just glad he was with us and had ten fingers and ten toes. Although now, I think I might have gladly given one of those fingers or toes (or my own) to have avoided what was to follow.

Our experience is likely not much different from many others in the same boat.  Our son went on to struggle with so many symptoms and deficiencies that it would save time to just run a bulleted list to give you an idea of what our flavor autism looked like:

• Significant sleep disturbance lasting well over six months and involved me having to go to sleep when he did at 7pm, just so I could enjoy the first 4 hours of sleep each night, because the rest of the night was riddled with waking/crying episodes every 45 minutes all. night. long.  for at least 6 months and quite honestly, even when we got his sleep figured out, he still often woke at least 5 times a night, but at least went back to sleep more easily.
• Colic, which I now know was due to the formula he was being fed.  Formula is a dairy product and is filled with corn syrup solids, which feed bad bacteria.
• Chronic ear infections, of course resulting in prescribed antibiotics that harm the beneficial gut flora.  The chosen antibiotics in his case, I also discovered, encourage the overgrowth of insidious pathogenic microbes in the clostridia family (more about this later).
• Chronic rhinitis was evident from birth until we removed dairy years later.
• Loose stools which lasted most of his early life.
• Regression after vaccinations and with illnesses, eventually leading to a sliding backwards that no longer recovered on it's own.
• Sensory integration disorder even from very early on like hating dirty hands to the point of severe tantruming and sensory defensiveness resulting in him hating cuddles or hugs, he pushed away from us from BIRTH, no joke.  I have a picture of him pushing hard against his father, while we were still in the hospital.  He arched his back away from me during nursing which was a culmination of sensory and dietarily related issues.
• Auditory functioning disorder, which was part of the sensory disfunction, caused him to say "What?" frequently.  It would appear like he didn't hear us, but it was more about surrounding sounds that caused confusion in what he was hearing.  We had his ears tested and they were fine, although nutritional deficiencies did cause a lot of ear wax to chronically accumulate in his ears.
• Sound sensitivities causing him to scream while squeezing his ears hard or to react physically.  One time he punched me in the face for flushing a very loud public toilet when I was crouched down at his level to help him.  Another time he literally scaled his father's 6 foot tall body to get away from a nearing motorcycle outside.  Fear of sudden loud sounds would set off a cascade of high cortisol responses to everything following the event.  
• Frequent rocking while sucking his fingers hard enough to cause bleeding.
• Severe startle reflex requiring swaddling until swaddles no longer even fit him.  I had to cut the bottom of them open so that he could still have his arms swaddled for sleep.
• Hand flapping when he was excited and/or upset, and this was one of the first things to resolve when we began treatments.
• Incessant lining up of cars which is inappropriate play.  He would freak out if anyone interrupted his rows.  He would put rows of cars all over our couches and floors and we couldn't touch them for fear of an extreme tantrum.  This also resolved very early on with treatment.  It did return briefly through a healing crisis with homeopathy, which we found very interesting.
• Overstimulation couldn't be self regulated.  Even from infancy, if he was overstimulated by bright or busy toys, he would become physically agitated and hyper, then he couldn't fall asleep for a nap or at night, and the sleep problem would snowball creating more sleep loss in the days that followed.  
• Transitions were extremely difficult for him to navigate.
• When his hair was wet, even having just taken a bath, he had a wet dog smell, indicating an overgrowth of fungus.
• He had a variety of body, vocal and facial tics that shifted and changed from time to time.
• Hypoglycemia
• Self-limiting to foods containing gluten and casein due to the opioid-mimicry of the proteins.
• Severe debilitating OCD which interfered with his sleep, eating, brushing his teeth and playing.
• Daily aggression and defiance.
• Extreme mitochondrial fatigue - we thought he was just a chill kid and liked his stroller during busy events and long walks.  We didn't experience the toddler-walking struggles most parents go through at age two when their kids want to walk all by themselves everywhere, but by five years old, when he was STILL demanding to sit in a stroller and carriages instead of walking (resulting in wild tantrums) we knew something wasn't right.  One time, when I tried to force him to keep walking beside me in a grocery store after having JUST arrived, he laid on the ground and cried, because he physically couldn't go any further.  
• Wild tantrums with a hair-pin trigger.  It didn't take much to set him off.  0-60!  These tantrums were paired with his low threshold for frustration.  There was no ability to cope with stress of any kind.
• He had an unnatural fear of bugs, birds and dogs, more of a phobia.
• Significantly bloated belly (See picture below) which started from when he was a baby.  I recall family members talking about his "cute Buddha belly" well beyond chubby baby days.  He looked malnourished with thin, low muscle limbs and bloating. 
• Low muscle tone.
• Slow growth, so slow that there were periods when he didn't grow for over a year! And this is after having been in the 95% as an infant.

Now fast forward to the year 2019,  I can often be found indulging in reading studies, literature and books about microbiota.  Not only do I believe that the condition of Grayson's microbiome was terrible from birth, but I believe that is the sole reason for his diagnosis of autism, and may even be the reason he reacted so severely to his vaccinations at 12 months old.  I know, these are some strong words, but our experience coupled with the evidence being highlighted in recent studies makes a strong case.

The cause of a poor microbiome is quite varied, but factors include: diet (mine while pregnant and while nursing), antibiotics (of which he had SIX courses of in his first year of life), chemicals and toxins, chlorinated tap water, plasticizers (we used plastic baby bottles for his warm GMO formula), glyphosate, lawn chemicals....and so on and so on.  

So let's get a little more technical about this.  His gut bacteria were out of balance, probably from birth, then we used six courses of cephalosporins for chronic ear infections starting at just 3 months old.  Research has found that Celphalosporins trigger an overgrowth of pathogenic Clostridium species bacteria.  

Countless studies have also confirmed a connection between elevated Clostridium and autism.  

I believe it, because when Grayson was four, a stool test revealed elevated Clostridium and no growth of the beneficial Lactobacillus species, exactly as described by the studies I've seen. 

Digging further into his history, when he was three, an Organic Acid Test revealed Clostridia markers three times higher than the top of the normal range, along with excess yeast overgrowth markers! Some were almost four times higher than the top of the normal range.  We were on to something, but at the time, we didn't know how to navigate the challenge of eradicating this nasty bacteria.  

HPHPA is the marker for Clostridia.

So what is it about Clostridia that creates the perfect storm in our kids?  According to David Perlutter, MD, the Clostridial species produce propionic acid (PPA) in abundance, which isn't a good thing, especially if it passes into the bloodstream, as in the case of a child with leaky gut syndrome.  This is especially concerning during a time when their brains are still developing. Simply put, PPA produced by Clostridia is toxic to the brain and it increases gut permeability. Other influences PPA has on the body are that it effects cell-to-cell signaling which cripples the way one cell can communicate with the next, it leads directly to compromised mitochondrial function altering the brain's ability to use energy (note above where one of Grayson's symptoms was severe debilitating physical fatigue), it increases oxidative stress harming proteins, cell membranes, vital fats and even DNA and it depletes the brain of various molecule such as antioxidants, neurotransmitters and omega-3 fats (mood stability issues anyone?). 

In "Brain Maker", Dr. Perlmutter goes on to describe a few studies that demonstrate the connection between autism and propionic acid.  Let me just say right here though, I KNOW without a fraction of doubt, that Clostridia was, in fact, Grayson's autism.  I know this because of the direct correlation between his symptoms when he had it (seen on the testing posted above) and the resolution of symptoms once we used high doses of probiotics to combat the Clostrida, which resulted in a much improved test!  See the results below!  Normal range HPHPA (and candida).  One month of high dosed probiotics did this.  We had tried to control the overgrowth for three years, using antibiotics like flagyl at the direction of a well-meaning but misinformed biomedical doctor and high doses of natural anti-microbials (every kind you can think of along with multiple combinations).  It wasn't until we stopped them all and just kept increasing his probiotics that we suddenly saw glimpses who our little boy was.  It's essential to have a soil based strain in them to see these results, because we had tried numerous other high dose probiotics to no avail, previously.

So as I was saying, studies that confirm this...

In one study, they fed pregnant rats and their offspring diets high in propionic acid.  By the time the pups were four to seven weeks old, their brains showed developmental changes similar to those seen in children with autism. When Derrick MacFabe's research team from Western Ontario University injected PPA into animals, they exhibited symptoms commonly associated with autism almost immediately.  The rats developed repetitive behaviors, and hyperactivity, and were seen turning in circles, moving backward, and losing their desire to socialize with other animals.  They demonstrated increased anxiety and would "fixate on objects versus other animals"; they even had "favorite" objects.  Incredibly, these effects happened within two minutes of administration of the PPA and lasted about 30 minutes, at which point the animals would revert to normal behavior.  MacFabe's group also demonstrated increased inflammation in various cells in the brains of these animals. He believes autism to be an "acquired disorder involving altered PPA metabolism."  

Another study connected woman who get the flu during pregnancy (and in my opinion, the flu vaccination) with the risk of delivering a baby with autism, but wait for it....this also involves a molecule like propionic acid!  Pregnant mice were injected with a mock virus which resulted in offspring that displayed classic signs of autism and leaky gut syndrome.  When their blood was analyzed, the "autistic" mice contained a staggering 46 times more of a molecule like PPA, produced by gut bacteria and known to induce symptoms of autism when it's allowed to seep from the intestines into the blood. What was even more staggering is that by lacing the animal's food with a probiotic that has been shown to treat GI problems in mice, five weeks later, the leaky gut in the "autistic" mice had sealed up and their levels of the offending molecule in their blood had plummeted!  Their behavior also changed, showing fewer symptoms of autism, they became less anxious and more social, and they stopped the repetitive behavior.

Another very interesting fact to make note of here, is that undigested gluten is fermented by intestinal bacteria to produce propionic acid in the gut!! Gluten is one of the very few things that still has the potential to regress Grayson and now I fully understand the connection!  Gluten also creates leaky gut and creates an opioid effect, plus it's a carbohydrate which feeds bad bacteria.  It is absolutely essential, in my opinion, to avoid gluten in any chronic health condition.  Propionic acid and calcium propionate is also an FDA food preservative often found in wheat, bread, cheese, juices, as well as dried fruit.

It's clear that the interesting link between Clostridia and gluten, propionic acid, is to blame in our case.  What I found so fascinating about MacFabe's study above, is that Grayson used to carry around a favorite object of choice each day.  He wouldn't put it down for ANYTHING, we couldn't take it from him without inducing a tantrum and he wouldn't even play with it, he just had to hold it all day.  He even took these objects into the bath and to bed with him! I've never seen mention of this strange behavior before reading his study. 

To give you an idea of how severely infected Grayson was with Clostridia, here is a before picture and a few after pictures of him.  The change we experienced by switching him from gut-altering anti-microbials to just high doses of probiotics is quite evident, don't you think?  

Now granted, probiotics isn't ALL we did, in fact, I am writing a book, because the other things we've incorporated into our healthy lifestyle are too many to list in a simple blog entry, but the obvious turning point in his recovery was specifically associated with eliminating Clostridia and the one and only thing we did differently at that particular stage in his recovery was eliminate the anti-microbials and introduce probiotics in high doses!  Please know that we were already eating incredibly healthy with no refined sugars or preservatives in our diets so the combination of the probiotics and the healthy organic diet which aids to feed the good bacteria was essential. We also worked on our home environment extensively to reduce toxins around us and we decided to home school our boys so that we would have complete control over their exposures during this critical time in their development.

To see my blog entry from 2012 about the introduction of the probiotics, click here.  

I'll save the PANDAS piece for another blog entry, but put simply, that was mold related and there is an entire story behind that journey, which traveled parallel to this one, at times.  There was definitely some overlap, but as in this situation where I can say definitively when things shifted, the same goes for PANDAS and mold.  So stay tuned!