Saturday, January 30, 2010

A quick update regarding the amygdala and the vagus nerve

After some re-reading, I now understand in a way I didn't quite internalize before that stimulating the vagus nerve affects the amygdala. That is -- and I'm sure nothing is this simple -- in theory a problem with the vagus nerve could cause --- would cause, I think -- problems with whatever the amygdala does. The study reported on in this article seems to establish that pretty well. So ... I guess problems with the vagus nerve really might lead to problems involving dilation of the puils, for example. In fact, it appears that epinephrine does have SOMETHING to do with dilation of the pupils. (see this, for example.) And epinephrine does have SOMETHING to do with the vagus nerve:

"The research solves the mystery of how the adrenal gland could stimulate the release of norepinephrine in the brain, observers say. During stress, the adrenal medulla (near the kidneys) in humans and rats releases epinephrine into the bloodstream, famously causing the "fight-or-flight" response in the heart, lungs, stomach and elsewhere. However, epinephrine can't cross the blood-brain barrier. So what is the switch that turns on epinephrine? The vagus nerve."

-- Adelson, Stimulating the vagus nerve: memories are made of this

Wow this stuff is mind-bogglingly complicated. adrenal medulla? blood-brain barrier? afferent vs. efferent nerve fibers?

I think it's going to take a while to really parse through this stuff.

More on Vaccines and Faith in the Modern Western Medicine Establishment

This started off as a reply to Laura, but it grew so long it was rejected. How did I get so long-winded? (LOL)

It's taken me a while to get around to drafting this; we've had the flu here lately (yuck). But Laura IS right, there can be NO doubt that the pharma money is a major problem. And on a certain level, I agree that it's true that non-scientist parents shouldn't have to turn into scientists.

But ... then again ...

I am increasingly skeptical about the ability of institutions to deliver the things we intend from them. On the one hand, there are a lot of efficiencies to be gained from the type of society we have constructed here today -- increased specialization and all that. And I love (sort of) this idea of a great body of experts dedicating themselves to an issue, problem-solving, and coming back to us with these great state-of-the-art solutions/policies/proclamations that will tell us what to do. Meanwhile I can go join a different body of experts, right? It's just that there are certain costs I think to such a construct.

It's a bureaucracy ... it will have its own politics. It's a group of human beings ... therefore, it (they) will care about things like image, prestige and status. They will have their own group identity, and group members will probably eventually grow to care more about the opinions of the others in the group than anyone (or anything) else. They will develop their own culture, their own framework for viewing the world and the problems they work on. They will resist any suggestion that they look at the problem from another perspective. Stuck inside the system, they will struggle to see the problem from any perspective except that which they were taught. I am exaggerating somewhat here, but I think this is true.

For thos of us who are lawyers, how hard is it to think about a "legal issue" without "thinking like a lawyer"? How hard is it to explain the law ... REALLY explain it ... to a layperson? Now, I realize that law is not science, and so scientists have a certain advantage in being able to keep their frameworks more or less in line with reality. But I am skeptical about their ability to resist utterly what I see as the natural forces of human nature, which will keep them from always getting it right.

And there will always be a limit to the extent to which the policy decisions of a large political body charged with making decisions for a society as a whole are going to be best for a particular individual, whether they are based on science or not. I think really that the vaccine is a perfect example of that. My friend, the infectious diseases fellow, tells me (and I hope I am accurately representing her here) that you know, what the policymakers and even the community of physicians she belongs to as a whole worry about most is the herd immunity of society in general. For them, the cost-benefit analysis is very different. They want every child to get that vaccine so they can save a certain percentage of lives, even though they know for a fact that a smaller percentage will suffer side effects.

What I believe is that just like everyone else, these people "spin" what they say in the hopes of manipulating people into doing what they want. I do the same, I'm sure. It's human nature. So they downplay the risks and emphasis that the benefits outweigh the costs, yet I really think that their math here is society-wide. Of course it is, because their pronouncements are society-wide.

They count on individual physicians, perhaps, to step in and help patients with the case by case decisions as to whether or not to vaccinate. And this would make sense, if most people had physicians who were as smart as they should be, as dedicated as they should be, as well-rested as they should be ... but the reality is that most of us get herded in and out of those offices like cattle.

So many doctors have all convinced themselves that because they are smarter than the rest of us they can smell what's relevant and what's not in under 30 seconds and they don't have to review the file. It rarely if ever occurs to them that there could BE anything relevant that they didn't learn about in medical school or hear about in their continuing educatino class.

Regular pediatricians are reading the same press releases as everyone else, and how much do most of them know about autoimmune diseases or autism spectrum disorders? My mother (the psychiatrist) says most doctors never understood immunology and didn't do so well in these courses in medical school. Not until recently did I ever wonder what my physician's medical school transcript would look like. It's not like they all made As in everything. I don't know where you went to law school, but I went to a mid-ranked school where by definition half the class made a C or below. I think that everyone in medical school is so smart, and medical school is so hard, that just because they made a poor grade does NOT mean they didn't eventually master everything. I think probably most of them made some poor grades in SOMETHING. They probably had to, because medical school imposes some expectations that probably aren't realistic. But my point is, that what I'm sure is true but I never contemplated before, is that every physician you ever see has weaknesses, gaps in his or her knowledge. The real question is what are they? And will he or she admit it to you? To him/herself? Because that's the key.

I guess what I'm leading up to is that the older I get the more I realize that I have to take responsibility for my own health decisions, as poorly equipped for it as I am. Maybe I need to get better at picking doctors, I don't know. But I will never again have the kind of faith that I had even at age 30.

Tuesday, January 26, 2010

From allergies to amygdala to asthma to ....

I've been wondering lately about the extent to which T's allergies may be relevant to his PDD symptoms and developmental delays in general. Naturally I tried to look this up using Google.

The first thing I found was this blog. Apparently there was some study in which the autistic children were not more likely than anyone else to actually have allergies, but oddly they were more likely to have family members with allergies. That's kind of weird, don't you think?

This sentence caught my attention: "No patient in the autism and 28% in control group had symptoms of respiratory allergy (wheezing or asthma) (p <0.005)." What if a person had respiratory allergy with no symptoms. Can that happen?

I have a pretty good reason to be wondering that. T has had a very strange history of weird breathing and respiratory issues, and yet he was never diagnosed with wheezing or asthma. Except once he was diagnosed with reactive airway disease, only to have that diagnosis sort of retracted shortly thereafter. Apparently reactive airway disease is what they call asthma in small children when they don't actually KNOW what it is. Or they think it's not "real" asthma. Or something. Anyhow, not long ago I had him randomly tested and discovered that he has a fairly serious allergy to dust mites, nearly to the "severe" level. But the point is, he's been hospitalized twice since he was born with weird respiratory issues, and twice someone heard wheezing. But nearly every time anyone thought they heard wheezing, several other people heard no wheezing. Only once did anyone decide he really WAS wheezing, and shortly thereafter, the wheezing was apparently gone. by the way, it was definitely only audible through a stethoscope and then only after careful listening. Actually, I'm not sure if it was really "wheezing." Maybe it was just "crackle." Whatever that was.

Now I'm pretty sure my son has a respiratory allergy. He doesn't breathe well, especially at night, and he's clearly allergic to dust mites, so ... But I wonder. If he had been in that study, would he have been diagnosed as having wheezing or asthma?

And something else I wonder about ... T almost never coughs, no matter how sick he is. The doctor seems surprised. When she gave us the inhaler, she told me to give it to him when he coughs. I told her he didn't, but she didn't really respond. I'm pretty sure she didn't believe me.

I worried about it. I called back. Could the autism mean that for some reason he doesn't cough when he needs to? what if he can't clear out his lungs? The doctor said don't worry. Coughing is the autonomic nervous system, totally involuntary, his autism isn't relevant. Hmm. Well, okay, I thought. But I wondered. Why does she think T's disorder doesn't affect his autonomic nervous system.

Since the day he was born T hasn't nursed right, swallowed right, slept right or pooped right. Those difficulties weren't exactly voluntary.

And so ... today I wonder for the 100th time if it's really true that there is no connection between the cough reflex and the autonomic nervous system on the one hand, and autism (or whatever) on the other.

What I found is href="">this article by Hirstein et al. According to these folks (whoever they are), the autonomic nervous system would seem rather definitely involved in autism.

Actually, their first point is that there is reason to believe that the amygdala is involved in autism. I don't really know how that's related but I look it up anyway. Yep. Recent studies like the one described here seem to be producing a lot of reasons to suspect amygdala involvement in autism. I remember now that I already knew that.

What I didn't know is that the amygdala is related to the autonomic nervous system. At least, according to Hirstein et al., the amygdala "has what is thought to be an excitatory role in producing autonomic responses, such as pupil dilation, sweating of the palms and decreased gastric motility, via its connections with the lateral hypothalamus(Lang et al. 1964)." Well I don't know about that sweating of the palms business, but pupil dilation? decreased gastric motility?

These things sound familiar:

1. pupil dilation -- I think this has been a known connection for some time. I found this 2006 article: But what I really remember is an article that came out just last year in which pupil response time had over 90% accuracy in discerning autism. This article discusses in more detail the claim that The Biomarker has finally been found.

gastric motility -- as in my son's chronic constipation? And as in "the gi connection," real or sort of real?

So where does this take me? I'm not sure. So I go back to that weird failure to cough.

Well, it appears that the cough reflex is stimulated by the vagus nerve. Hmmm. Is that related at all to the amygdala? Well, I did find this:

"University of Virginia psychologists have moved the science of memory forward, reporting that stimulating the vagus nerve, which carries sensory messages to and from the brain, releases the neurotransmitter norepinephrine into the amygdala, strengthening memory storage in limbic regions of the brain that regulate arousal, memory and feeling responses to emotionally laden stimuli."

And then I find an abstract to a 1991 article called "Relations among autonomic nerve dysfunction, oesophageal motility, and gastric emptying in gastro-oesophageal reflux disease", from I glean this: "Recent studies suggest that vagal nerve dysfunction may be important in the aetiology of gastro-oesophageal reflux disease. [Nyx Note: T was (tentatively) diagnosed with this as a newborn, the first time he was hospitalized with respiratory problems!] Delayed oesophageal transit and slowed gastric emptying [Nyx Note: er, constipation?] occur frequently and may also be of pathogenic importance. .... We conclude that in gastro-oesophageal reflux disease there is a high prevalence of parasympathetic nerve dysfunction which relates to delayed oesophageal transit and abnormal peristalsis [Nyx Note: isn't this lower gut motility?] and may therefore be of pathogenic importance."

Hmmm. I look up vagus nerve in Wikipedia. Isn't this tantalizing?:

"The vagus nerve supplies motor parasympathetic fibers to all the organs except the suprarenal (adrenal) glands, from the neck down to the second segment of the transverse colon. The vagus also controls a few skeletal muscles, namely:

Cricothyroid muscle
Levator veli palatini muscle
Salpingopharyngeus muscle
Palatoglossus muscle
Palatopharyngeus muscle
Superior, middle and inferior pharyngeal constrictors
Muscles of the larynx (speech).

"This means that the vagus nerve is responsible for such varied tasks as heart rate, gastrointestinal peristalsis, sweating, and quite a few muscle movements in the mouth, including speech (via the recurrent laryngeal nerve) and keeping the larynx open for breathing (via action of the posterior cricoarytenoid muscle, the only abductor of the vocal folds). It also has some afferent fibers that innervate the inner (canal) portion of the outer ear, via the Auricular branch (also known as Alderman's nerve) and part of the meninges. This explains why a person may cough when tickled on their ear (such as when trying to remove ear wax with a cotton swab)."

I also learn that vagal nerve stimulation is a treatment for epilepsy. Given the link between autim and seizures (well, and the fact that at least one doctor has speculated that T may have had seizures when he had his weird respiratory episdoes as an infant), that seems kind of interesting. Oh, my grandmother's brother had epilepsy too.

Where does this get me? I really have no idea. But now I google "vagus nerve autism." Turns out I'm not exactly a pioneer.

I find this: "Link between the Vagus Nerve, Cholinergic Deficit, Inflammation, Cognitive Deficits and Inattention: the Soul of the Gut – Brain Connection." A powerpoint presentation by Dr. James Jeffrey Bradstreet MD, MD(H) FAAFP (Director, ICDRC, Adjunct Professor, Pediatrics, Southwest College of Naturopathic Medicine). I wonder ... is this legitimate or ... you know ... quackish stuff?

It will have to wait because this is the point where I just have to go to bed.

PS -- well, naturally, I couldn't just go to bed. I had to at least skim the powerpoint. Holy cow, this guy actually seems to be advocating sticking a nicotine patch on young children! Well, I know nothing about it, so I'll reserve judgment. But ... wow. It seems a little ... hasty. Or something. If you look at his diagrams, you can see that it actually looks as though the vagus nerve does not connect to the eye, so I'm thinking it doesn't explain the pupil dilation effect, so I'm skeptical. Anyway, this looks a little too pat and neat. If it were really that simple, surely everyone else would have jumped on board by now. It just can't be this easy. And given how different different children are with ASDs, it seems a little ... dangerous, let's say ... to be posting general advice like this on the internet involving a serious drug that is a known toxin for off-label use! I don't like it.

Friday, January 22, 2010

A thought about vaccines

I just want to go on the record as saying that I am extremely disappointed in what the scientific types are offering up on these topics lately. I guess it never occured to them that a parent might not be interested in taking everything they have to say at face value, and that I might be as skeptical of them as they suggest I should be of everyone else (and I am). Regarding vaccines, why does everyone seem to think that it is appropriate for "anti-vaxers," who are mostly parents working with personal observations, to proffer up some sort of scientifically sound theory as to HOW the causation works? This seems extremely silly to me.

It also seems that almost every person I ever see discuss this topic cannot resist trashing Jenny McCarthy, a person whom I know nothing about (nor do I care to, really). It's annoying because it's so irrelevant to my personal decisionmaking what she has said and she seems to be some sort of straw man for the "scientific" people, for lack of a better term.

I am not anti-vaccination, for the record, I'm just pro-my-son, and I sure wish I could find a balanced, reasoned, logical discussion about the risks of vaccines that is really honest and doesn't expect me to just assume that a bunch of guys in white coats have really got it all figured out and so I should just stop worrying MY pretty little head about it. Or God knows, I should just let these strangers inject my kid with God-knows-what (because I sure don't) or else I'm an unpatriotic idiot who's threatening herd immunity because I'm too stupid to trust some government bureaucrats and a bunch of academics. Yeah, we know THOSE people are never wrong.

You see, here's how I see it:

1. everyone agrees that autism = genes + environment
2. now call me stupid, but to me environment means, inter alia, the stuff in the needle that they are injecting into my child.

You know what? there are a lot of environmental variables. And you can bet that I pay attention to/worry about every single one of them, from the stress in my son's life to the air that he breathes to the food that he eats to the medicine he takes to the ... yeah, the shots.

Alright, I didn't do so well in science, but I would like someone to explain to me how this makes me irrational?

Now, it's true that measles, etc. is scary stuff. And yes, I plan to look up those statistics too. But after reading for about the 5oth time the statement that "the benefits outweigh the risks" of vaccines, I'm starting to get really p-- ... er, ticked off, that these patronizing people think that they don't have to lay out some kind of real case that this is true. Or explain whether the benefits to which they are referring are the benefits to my son or the benefits to society.

Vaccines are an amazing modern miracle, but they are also deliberately provoking my child's immune system. I have read enough to be pretty durn sure that none of these people understands nearly as much as they pretend to understand about how the immune system works. You know what, they just really don't. For that matter, I'm not convinced they know as much about the human body PERIOD as they pretend to, either.

And when it comes to my son's brain, it really p-- ... er, ticks me off when people pretend to know things that they don't really know. I don't care who they are.

I'm not playing games here, I have to get it right, people. What are all these people trying to accomplish anyway? One thing is for certain, I have yet to find a single person who really sounds like they give a rat's a-- about my son's neurological condition, or the fact that *I* have to get this one right. I can't just take their frakkin' word for it.

And no, I'm not impressed by their studies, either. They don't actually say zippo, as far as I can tell, about whether or not something in those vaccines could be hurting/could have hurt MY kiddo. Granted, I need to take a class in statistics. But I smell a lot of smoke and mirrors.

What it all boils down to is that all these people know is that MOST kids with autism don't GET autism from vaccines. that's it. that's all they know. Otherwise, they seem to expect that I should just toe their party line unless I can prove to them that vaccines are bad for my kid. Huh?

Sure, sure, down with the Jenny McCarthy fear-mongerers. But really. Boo hiss to the patronizing white-coat-worship-mongerers.

PS-- Er, if you happen to be my brilliant best friend who happens to be an MD doing a fellowship in infectious disease right now, and you know who you are, and you happen to read this post, I trust you know I am not talking about you. I'm just talking about the stuff I've been reading. YOU are awesome and if all of "these other people" (I know that's vague but I didn't keep good notes and I'm tired) -- anyhow, if only everyone in a white coat were like YOU, this post wouldn't exist.:)

Tuesday, January 5, 2010

How come .... ?

I realize that in the haphazard way in which I "research" things that I have no idea what the real universe of research out there looks like, but I'm going to gripe anyway. If I really wanted to know how to understand autism and people with autism, and more importantly, HELP people with autism, I think I would start by trying to distinguish between autistic people who are doing well and those who aren't. Then I think I'd start trying to figure out why. Has anyone done that? I read these studies where a certain percentage of the kids respond well to intervention and others haven't, well ... isn't the obvious question, what's the difference between these kids? But of course, such an investigation could never be a controlled and blinded study, it would be pure fact-gathering. Doesn't anybody do that anymore?

Monday, January 4, 2010

The Denver Model ....

How many autism programs ARE there exactly?? It seems that once a week I learn about a new one. Actually, in fairness, I'd heard of this one before, but only recently did it really catch my attention.

As discussed in this New York Times blog, according to a recent study, the Denver model significantly boosted the IQ scores of participating children as compared to a control group of children receiving standard county services. As in, the standard group achieved a 4 point gain, while the test group rose 18 points.

It sounds like this model is not too dissimilar to Floortime, and I was very pleased to see that it sounds a lot like what we've been doing with our own son in our cobbled-together home-based therapy which is largely inspired by Floortime (and a few other things, like this fascinating book by Rutgers professor Lorraine McCune, this book, and of course The Mislabeled Child, and ... well, it turns out I haven't kept good track of all the articles and books etc., which I'm hoping this blog will help with.:)

Anyhow, I think I'll be taking a closer look at the Denver model's web materials, and maybe even reading the book -- so stay tuned ....

ps -- I was disheartened to read the one and only review of this book to show up so far on I think I'll look at it anyway out of curiosity, but I was sorry to read that one parent who already does interaction-based therapy thinks there is nothing new in this book. Still, I like that they did a STUDY, so I think I'll check it out anyway.