passionless Droning about autism

So what is this all about?

I am currently seeking self awarded degrees in immunology, neurobiology, gastroenterology, genetics, metabolism, epigenetics, and other areas to try to see how they all work together in the world of autism.  Any commentators are welcomed to come along for the ride.  Hopefully we can learn something from each other.

22 Responses to "So what is this all about?"

I saw your comments on scienceblogs. Insightful. do you have a science, math or stat degree?

Hi mary Podlesak –

I appreciate your comments. I don’t have a degree in science, math, or statistics, I’m just some jerk on the internet trying to cure his son.

- pD

Dear Fellow Jerk,

I love your blog. I am just some idiot who decided to get a PhD at the age of *cough* 39 and thinks neuroimmune interactions are the bees knees.

Check out some of my stuff on Rett in Nature http://www.ncbi.nlm.nih.gov/pubmed/22425995

-Noel

You and me both. In my case, my daughter.

no i have somone using poison posible on public area

I wonder if the higher rate of autism among early births holds true for unvaccinated babies. Many parents have reported their tiny newborns receiving regular HepB on date of birth, for example, even though the baby was so small, and then the baby went on to receive the regular vaccine schedule based on age calculated from birth date rather than from due date. Perhaps preterm birth is a risk factor for adverse effects from vaccines, e.g. immune system and GI system thrown off kilter, neuroinflammation, biochemical changes, or other forms of developmental changes.

Not sure how this comment got here. Must have been intended for the article on low birth rate. Feel free to delete.

So, which degree(s) do you have, if not science, math, or statistics?

Hi Twyla -

Two degrees, English and MIS.

- pD

Oh, so glad to find this site. I’ve been working on these same degrees too, trying to understand what’s happened to three generations of my family: my mother, brother and son, as well as my own challenging immune system. You have lots of interesting posts here.

Hi Tracee –

Thanks for stopping by my blog and the kind words. Do you have a blog? I’d be interested in your thoughts on any of my posts. Good luck with your education.

- pD

Hi, i’m a speech therapist who works with preschool age children with autism. I became sick about 3 years ago and am recovering. I was diagnosed with leaky gut, adrenal fatigue, subclinical hypothyroidism, estrogen dominance, dysbiosis, multiple chemical sensitivity, multiple food intolerances, anemia-folic, b12, iron as well as mercury exposure from amalgam removal. I have noticed the similarities between myself and my students and am convinced that our environment is to Blame for turning on those autism genes. Your site is Very interesting and is the best i have seen at linking these health conditions with autism. I think every parent of a child with autism should know these things. Keep up the good work and I look forward to exploring your blog

May I ask about your son?

Hi feelyliving –

Thank you for the kind words. We need more speech therapists like you working with the young ones, please keep it up.

What would you like to know about my son?

- pD

Hi, I love the blog and appreciate you posting your thoughts online. I’m more of the jerk “lurking” on the internet trying to cure my son. But your blog prompted me to interact a bit. I’m curious about your opinion on https://www.stopcallingitautism.org/ and their protocol designed to stop Microglial activation as a treatment for autism.

I’ll hang up and listen for my answer.

Ryan

In my opinion, and it is that (an opinion, but based in experimental observation) microglial activation may (if indeed there is any connection between it and pathology) be a sign of the immune system in a helping rather than a hurting role.

It is exceedingly dogmatic to assume that immune system presence and activity within the CNS is something to be *stopped*

Much recent research supports a supportive rather than destructive role for immunity in brain homeostasis and function.

Hi Ryan –

Thanks for the kind words and stopping by my blog.

As far as stopcallingitautism, there’s things I like and things I don’t like from what I saw in a brief look at their website.

From a broad overview perspective, I like the idea of trying to reduce microglial activation as a treatment modality. You might be interested in knowing that this is being evaluated in a more rigorous format with minocycline; which on paper is a good looking drug for a condition caused by activated microglia.

https://imfar.confex.com/imfar/2010/webprogram/Paper7547.html

https://imfar.confex.com/imfar/2012/webprogram/Paper10210.html

Unfortunately, the data from these studies aren’t showing much in terms of help, so that isn’t so good. They are preliminary trials and there is much to learn, but a ‘wow factor’ just doesn’t look like it is going to come out of this. Compared to the list of things on the stopcallingitautism site, minocycline is at least well known to affect microglial activation (among other effects).

As I read more about microglia’s participation in optimizing the neural network, it seems likely to me that by the time we have a diagnosis, a lot the *damage* (or *difference* depending on your mindset) has already been done; I’m not sure if inactivating the microglia after the fact will be much good for that part of the equation. That isn’t to say that balancing the neuroimmune environment won’t provide benifits, it might (?), but I don’t think that it will be the end all / be all.

What I don’t like on the treatment list for stopcallingitautism that I’m not sure that the all of the things they recommend will actually do reduce microglia activation; those treatments *might* help with microglia activation, theoretically. I mean, I can see how if:

1) Your child has a gluten sensitivity that results in increased inflammation. (somewhat supportable through literature)

2) The peripheral inflammation, in turn, triggers activation of the microglia. (supportable/plausible through literature)

3) You remove gluten, tamper down the peripheral inflammation, and in turn, reduces the degree of activation of the microglia. (unsupported through experimentation AFAIK) [And even if you do have an effect, is the difference statistically significant, but clinically insignificant?]

Then maybe you’ve gotten somewhere. But that is a lot of maybes.

What you won’t find in the literature set provided on stopcallingitautism, or anywhere, is a trial on this type of stepping stone analysis, even in mice, much less humans.

Don’t get me wrong; my son is GF and takes probiotics (though no where close to 400 bl / day!), I don’t know what the mechanism is, but I do know he acts like a crazy person when he gets wheat. So I like the idea of dietary changes / microbiome help in general, but am growing more cautious of anyones abilities to tie together the mechanisms. The stuff on antivirals and antifungals on that site share similar problems in my opinion. We gave our son antifungals in the darkest days and it was a LIFE SAVING MIRACLE for us; but I really don’t know if the effect was through modification of microglia or what. I tend to think it was a reduction in pain, but we really are stabbing in the dark.

My thoughts on these types of interventions has been changing a lot the last few years; I’m not sure that we are clever enough to understand the effects of giving children antivirals, for example. Sure, we might get their titers up or get more juice out of the NK cells, but I grow increasingly skeptical of the idea that this is *all* we would accomplish with such treatments. We don’t get to tinker around with interconnected systems and only have the effect we want; I think we are going to learn that lesson the hard way on some very popular things, but unconventional treatments are interacting with the same systems.

On the other hand, I can remember the times when my child was failing and destroying the entire family; a tsunami of conventional and unconventional therapies were thrown at the little guy, and he came out the other end still very affected, but happy and health(ier) instead of hurting himself and constantly sick. Thank goodness I can’t be sure in every instance what worked, what was pissing in the wind, how the things that did work did what they did, or what else we might have done in our zeal to help him. I guess I’m trying to say that I don’t think anyone has anything but educated guesses, and in lots of cases, just wild ass guesses.

My best advice is to proceed as cautiously as your situation allows, blind your therapists and teachers to any interventions you do try, stick to one treatment at a time to try to isolate changes, and run from anyone who tells you they can cure your child. Based on my experiences and what I’ve read, some of the things on that site might help some children, but the jump to a mechanism of altering the neuroimmune environment is a large leap without substantial literature support.

-pD

Can you elaborate more on antifungal thing. How did it help your son, what kind of change did you see, what did you use and the dose, duration?

How do you think antifungals acted via microglia? What signaling mechanism is that?

Hi Noel –

Well, the antifungal thing was a miracle for us. Here is the TL:DR with a timeline:

1) My son started banging his head into the wall/window/floor/whatever about age 18 months.
2) By age 24 months, my son is hurtling toward the wall and smashing his forehead into it thirty or forty times a day. He has a massive bruise on his forehead at all times.
3) Shortly after his second birthday, we take him to DAN doctor. He proceeds to have a bowel movement in the waiting room. The doctor comes out and says, ‘whew! this kid has a yeast infection!’. She prescribes an antifungal and recommends probiotics. She advises that the initial period of die off ‘can be rough’. Understatement of the century.
4) Within a week of starting anti fungals, my son is hurting himself once or twice a day.
5) Within two weeks of starting anti fungals, he has stopped hurting himself completely.
6) We (his parents) begin to have hope.

The idea of yeast overgrowth contributing to autistic / SIB behaviors is not looked upon kindly by the skeptical community at large. There is no literature support for what we witnessed, as far as I know. That being said, this wasn’t somehting that was susceptible to a placebo effect, my son had no idea he was getting medicine to treat SIBs, and we weren’t imagining his injurious behaviors, or its cessation.

We *think* that my son was in chronic GI pain and the antifungals helped remove that pain, but we really don’t know the mechanism of action. His stool consistency definitely improved post antifungal/probiotics. I suppose a PANDAS style auto antibody generation theory would also fall within the range of wild speculation.

I don’t know how many children have SIBs that are related to this, we might be the only ones. I wish I had better data, but at this point, you know everything that I do.

Interesting stuff. I’ve played with mincycline a bit in cahoots with a PhD student from a neighboring lab in post-stroke treatment. When inflammation is acute/severe, it seems a worthwhile agent. It has great CNS penetration.

On the negative side, however, mino is first and foremost an antibiotic. So, if you’re targeting something as specific as microglial activation (assuming this is a good idea in the first place–I’d say the jury is out) what you’re doing to the homeostasis of the microbiome is quite significant. My worry would be that by taking out a large proportion of commensal bacteria, one might be opening up the host (a kid) to a massive shift (and maybe irreversible) in the contents of the bowels, etc.

Perhaps this isn’t a risk worth taking.

pD, you mentioned antifungals showing effects, and that’s really interesting. It makes me wonder about T cells–specifically the Th17 subset, which, as you probably know, are critical in MS and EAE for initial breach of the BBB before frank autoinflammation mediated by TH1. TH17 are shown to be critical in antifungal mucosal immunity.

Food for thought…

I hope you are still keeping strong. My sisters and I are taking care of our elderly mother who has a form of dementia (I never say Alzheimers as this is a disease and what we have is a symptom)

After a failed trial with an anti-demetia medication I was drawn into the world of the internet to seek answers.

The first thing I discovered was that there was not a whole lot of joined up thinking where chronic illness was concerned. My mother was on 10 medications at least 3 of which had the potential to cause dementia like symptoms.

Several of the medications were prescribed to offset the side effects of others, and I discovered that no testing of this cocktail could ever have taken place.

Cleaning up this mess took nearly a year, but her condition improved markedly as a result. This taught me my first lesson.

“First do no harm”. She is now on four medications has we patiently wait for her body to eliminate the residues.

During this time I read the Book “Gut and psychology Syndrome” by Natasha Campbell-McBride. I search your blog and didn’t find a reference, it is worth reading.

The author is a physician with specialisations in diet and neurology. She successfully healed her son’s Autism by directing her efforts at a hypothesis which centers on the gut.

I will stop there since if you have read the book already you will know the idea. If not I would be happy to expand on it.

We have employed several of the primary elements of this approach. It was notable that natural probiotic foods were demonstrably more effective than commercial preparations.

Though for controlled and repeatable protocols commercial preparations have their place.

Our goal this far has been to optimise the our mothers healing potential. And also to exploit the extraordinary nutritional and detoxifying potential of her gut bacteria.

She is showing steady improvement over several months and sporadically reponds to familiar people and objects. We are preparing musical stimulus which appears to be very promising.

I have read with interest the research on microglia presented here. It is a different road to the one which I am following right now. I suspect my mother’s condition was aggravated by gut dysbiosis and food malabsorption from the drugs.

It seems that I may need to research this topic as well as after reading the blogs here I found this.

http://brainblogger.com/2012/01/06/mighty-microglia-the-brains-immune-cells-could-be-the-key-to-treating-brain-diseases/

There are so many paths to test. But this will give me something to do while I assess the impact of her tooth extractions and the supplementation which includes coconut oil.

Now that I have found this site I would be happy to read over the older posts and offer any insights I can.

Hi John –

I’ve been doing a little research on dementia myself. :(

The crazy medication of our elderly is a difficult problem, but I’m on board with the idea that the notion they have any idea on the effects of taking ten pills at once is a total joke. If only it were funny.

The trials and tribulations of Alzheimer’s research and (repeated) failed drug trials informs a lot of my worldview on complicated neurological disorders with my take home message being: “boy are we a bunch of dummies who thought we were smart”. We chased amyloid for two damn decades, cleared the hell out of some mice amyloid, then fired on people, sometimes saw reduced amyloid, and couldn’t tell the treatment group from the placebo group cognitively. I’m not big on bashing pharma per se; they’ve got a ton of really clever people working on that stuff, but the fact is, we just don’t understand the underlying CNS biology well enough even after throwing tens of billions (more?) at it. When I see people proclaiming with certainty that we have the slightest clue on what is, or usually *isn’t* associated with autism causation on comparatively flaccid data I just shake my head.

The microglia angle with dementia is a tough one; sometimes they’re trying to help, other times, it seems like they’re stuck in a rut and wind up causing damage. There is a not insignificant amount of data on aging and a pro-inflammatory phenotype that you might find of interest.

I’ll check out the book you recommended.

Thanks for stopping by my blog!
- pD

Hi Noel –

I welcome your comments! Thank you for you kind words and good luck on your journey.

- pD

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  • thevaccinemachine: http://www.upstartmagazine.com/reducing-the-extra-brain-synapses-can-cure-autism-says-study/299301/ this may be of interest
  • Twyla: Long time no post! Hope all is well.
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