passionlessdrone
December 28, 2012 at 1:38 am

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

Noel
October 13, 2013 at 4:19 pm

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?

passionlessdrone
October 14, 2013 at 2:40 pm

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.