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s/o - immune system and the brain, behaviors, etc.


wapiti
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If anyone can recommend books, articles, etc., on this general topic, please post here.  There was a study that came out in the summer, IIRC, and I think it was posted here, about autism and gut microbes.  http://www.nbcnews.com/health/health-news/germs-gut-may-affect-autism-study-finds-n107451

 

I recently read The Second Brain, which provided a good background in how the enteric nervous system works generally.  I am now on to Bugs, Bowels and Behavior, though I only just started it. I'm looking for the big picture.

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Dr. Michael Goldberg's "Myth of Autism" is an interesting read, even though my own child with ASD does not fit his Neuro-Immune Dysfunction Syndrome profile. Do be forewarned that I know a mom whose child was a patient of Dr. Goldberg's and had a VERY negative reaction to the treatment protocol. So like any other biomedical treatment for ASD, do your homework before deciding on any recommended treatment.

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I would try to find a doctor with a Plan A and a Plan B. The family we know that pursued PANDAS tried the protocol but has had to switch to more traditional therapy (which is helping). I think the PANDAS doctor has been doing both--I think he had some benchmarks and milestones in mind, and then recommended moving on as things didn't work out. I might be mistaken on that, but I think that's the case.

 

You might find podcasts on The Coffee Klatch Special Needs talk radio show that deal with biomedical stuff. 

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I suppose I should add Bock's book to our list here.  I forgot what was so controversial about it/him.

 

"Healing the New Childhood Epidemics" is a fantastic book. It is controversial among the "it's all just genetics and the only valid treatments are pharmaceutical and psychoeducational ones" set. Unlike the Goldberg book, it doesn't advocate one specific protocol but rather finding a good DAN/MAPS doctor to oversee treatment. http://www.medmaps.org/

 

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Question I'm looking into this morning:  does GF help anxiety?  I was reading an article speculating that anxiety causes tummy troubles though that would seem to me to be a backwards view.

 

(as an aside, we just returned from an extended family vacation... two of my three brothers now eat GF, one thanks to his celiac girlfriend and the other just because he feels much better - I'm guessing it's simply because we have a very strong family history of type 2 diabetes/insulin issues, so any carb reduction is good)

 

Eta, I was searching the forums and noticed this post:

 
 

 

kbutton, would your advice therefore be to avoid oat flour that is not GF?  (fiddlesticks - I have a couple bags full of non-GF oat flour - maybe I'll use those up first)

 

If you need to be strict, yes. My SIL can tell with the first serving if regular oats will bother her or not, but I am not willing to take that chance. She just gets brain fog, not so much of the other stuff, from accidental gluten.

 

All that said, I found my gluten issues (for lack of a better word) after I did an elimination diet. I couldn't add it back in. I know some people remove one thing at a time, but then they find out later that it doesn't help because they need to eliminate both x and y; eliminating one thing doesn't fix the whole problem. So, I am a big fan of finding an elimination strategy that takes tons of stuff out and adds it back in slowly. Whether or not that is valid for everyone, I don't know.

 

And I would see what that book from CW suggests if it has that sort of thing in it. It sounds wise to go broader than PANDAS if possible. 

 

The family I knew that dealt with PANDAS had their son's urine tested to see if fish oil would be helpful or harmful. Maybe pyroles is what they were looking for? Maybe that rings a bell with someone.

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When my little one got her diagnosis, we had a bunch of tests done. Every doctor had his/her own list of tests to be run. Poor DD2 had to go back 5 separate times because they could only take so much blood at a time. After all that, the only things that came back out-of-the-ordinary were carnitine (we started supplementing and it helped quite a bit) and one of the parts of the lipid panel. None of the doctors knew what to make of that last result so it was left as a "huh, that's weird" thing.

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You asked about the correlation between motor issues and anxiety?

This needs to be asked in a different way?

Does the experience of living with 'motor issues' cause anxiety?

 

Where perhaps you might consider what is like, growing up with 'motor issues'?

Observing others doing motor activities automatically, and accurately.

While one has varying degrees of difficulty, with these same motor activities?

 

While others can observe someone do a motor activity, and be fairly confident in their ability to imitate it?

For someone with motor issues, it is unknown?

Will they be able to do it the same way as they observe?

Will the other person understand, if they aren't able to imitate it?

How many times should they attempt it, before they give up?

 

Then do they try different ways to do it, to find a way that suits them?

Is their a way for them?

Their is also the question about whether a particular motor skill, is critical for becoming independent?

 

Then their is also the complex 'Social' side of 'motor issues'?

Which begins with both parents understanding of the motor issues?

Also comparison with siblings?

Along with understanding from the extended family?

Then into the community, starting with pre-school.

Where a child begins the process of gaining community acceptance and status.

 

But a child with 'motor issues', or any other type of 'Disorder'?

Is faced with the challenge of gaining social acceptance and recognition?

 

Where the seeds of anxiety are planted very early, and nurtured by 'others'?

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Fecal transplant has had some promising research come out recently. I've got my eye on it as something we might consider trying down the road. Another one I'm keeping an eye on the emerging research is helminthic therapy. http://www.wormtherapy.com/theory.html

 

IVIG seems pretty risky to me because it's a pooled blood product. There are something like 1,000 donors for each dose. Maybe it's just that I'm a child of the '80's and have vivid memories of poor Ryan White, but I wouldn't want my child to wind up with some nasty new infectious disease as a result of receiving a tainted pooled blood product. Especially when it's used "off label" for a non-life threatening condition like ASD.

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I just looked at a website for the Fecal Transplant Foundation, which says that the FDA only allows FMT for cases of c-diff that do not respond to conventional treatment or as part of a research trial.

I agree that the risks of IVIg are real. FMT sounds much less risky, especially if a family member donates (which raises its own set of questions) and infections are tested for, which is common practice.

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Dr. Michael Goldberg's "Myth of Autism" is an interesting read, even though my own child with ASD does not fit his Neuro-Immune Dysfunction Syndrome profile. Do be forewarned that I know a mom whose child was a patient of Dr. Goldberg's and had a VERY negative reaction to the treatment protocol. So like any other biomedical treatment for ASD, do your homework before deciding on any recommended treatment.

Thanks for suggesting this book!

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