Autism ASD and Fever ?

[geodob]

As we have many children with ASD and Autism here, I thought that I'd let you know about some studies and research that I've been looking at?

Which began about 5 weeks ago, with a discussion with a parent of a 16 year old with Rett Syndrome. 

That also has the same social and behavioural issues as ASD.

Though her daughter had recently has a severe fever, that lasted about 2 weeks.

But what her mother particularly observed, was that during the fever.  That the social and behavioural issues had disappeared, and as she said. Her daughter was acting 'normal'.

Yet when the fever disappeared, the social and behavioural issues returned again.

The mother also noted, that this had also occurred about 2 years earlier, when her daughter also had a fever.

Where her mother was looking for an explanation of this?

 

So I began looking into this?

What I found, was a history of anecdotal reports from parents of children with ASD/ Autism going back over 30 years.  Of parents reporting that when their child had a quite strong fever. That their was a significant reduction in the social and behavioural issues.  Which was often described as 'normal behaviour'.  But this disappeared as after the fever had gone.

 

This is most significant, as while it was only temporary?  As it shows that these social and behavioural issues, are not in fact fixed/ permanent?

That they can actually be changed,

Looking further into this, I found studies and research going back to 2006.   That has been trying to identify the biological changes of fever, that cause this temporary change?

Which presented a problem, as it is not ethical to cause a child with ASD to have a fever.  To try and identify what is happening?

 

With fever, it raises the body temperature.  Which in turn, causes the production of what are called 'Heat Shock Proteins'. (HSP's).  Of a few types.

That are an important part of our 'Immune Response System'.  Which they suspected might be the primary factor, causing these 'changes'?

So that as an alternative to a fever?

A number of trials were conducted, that had ASD children bathe in very warm water.  Until their body temperature, rose to about 102 F.

(They were double blind studies, with another group of ASD children, who bathed in cooler water.)

After the bath, parents then observed their child's social and behaviour issues, not knowing which bath their child had been in.)

 

Where the studies showed that their was a notable change in the children that had been in hotter bath.  That disappeared as their body temperature returned to normal.

But their was no change in the children in cooler bath.

The bath helped confirm, that the Heat Shock Proteins were the primary factor.  As it didn't trigger other immune responses, that a fever triggers.

 

So having said all of this.  I wonder if parents of children with ASD/ Autism here, have observed similar changes,  when their child had a fever?

 

Having identified the Heat Shock Protein as the factor.  A search began for something to stimulate this?

A previously identified substance called 'Sulforaphane' had been shown to stimulate HSP's.

So that trials have since been conducted, that have shown Sulforaphane will reduce the social and behavioural issues.

I'll add a link to one study.

Though Sulforaphane isn't a drug?  As it's simply a substance found 'Broccoli Sprouts',

Which can be bought like vitamin supplements. 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4217462/

 

So I thought that I'd mention this for discussion.

[OneStepAtATime]

Huh. Thanks for sharing.  I have nothing useful to add but it is very interesting to read about.

[Lecka]

I don't see this with my son, but I have heard of it. I read one account somewhere where the parent said she felt her son would make himself agitated on purpose because he could function better then, and she thought it was the same thing because she saw it also with fevers.

 

But again it is not something I see. But children are so different with autism!

[Lecka]

Also I haven't met anyone personally who has ever mentioned it, so it makes me think it may be fairly uncommon. But that is hard to say.

[Crimson Wife]

I have heard moms I know IRL mention it. My DD calms down significantly when she has a fever but I don't think it's the ASD causing the hyperactivity but the co-morbid ADHD. I think we might have tried the broccoli extract ages ago on the suggestion of our integrative doctor but I can't remember (we did a lot of "trial and error" of different supplements and that sounds vaguely familiar).

[kbutton]

My son was so remarkably calm when he was feverish that I used to feel guilty for being glad for the break. I can't comment on social differences as he has rarely been feverish past toddler ages, and even then, he mostly had fevers after immunizations. He was more interesting in playing when he was feverish, and his toys satisfied him longer (he mostly didn't like toys that much). If the fever was particularly high though, he mostly was listless.

 

My son was not diagnosed until he was almost 9, so there is no hindsight connecting it to autism. This all happened before we knew that ASD was the explanation. **ETA, explanation for his behaviors.

 

He has always loved broccoli--when he was little, he would cradle it in his arms like a baby doll while we went through the grocery store. He would sometimes sing songs about how wonderful broccoli is. 

Edited June 1, 2017 by kbutton

[Innisfree]

I have seen this in my dd. It was years before she was diagnosed. She got a fairly high fever, and afterward her symptoms vanished for several weeks. It was fairly remarkable: all of a sudden I could tell her to go to time out after misbehavior, *and she would go!* Calmly!

 

Eventually things went back to normal.

 

She has not actually had fevers much, and I haven't seen the effect at other times.

 

I have seen that research and been intrigued. Unfortunately dd doesn't like hot baths or broccoli, but maybe we need to try again.

Edited June 1, 2017 by Innisfree

[Guest]

Broccoli Sprouts for Autism? What You Need to Know (Autism Speaks)

https://www.autismspeaks.org/wordpress-tags/sulforaphane-side-effects

[wapiti]

A well-known PANS/PANDAS doc has discussed the alternate fever response at length (Dr R. Trifiletti, neurologist in NJ).

 

ETA, for example, in this older slide show, his theory on alternate fever response is described.  Involves insufficient histamine (in its neurotransmitter capacity) that is specifically produced in the posterior hypothalamus.  I only learned of this recently and haven't quite figured out his idea.  It does fit with other things I know.  I wonder if both theories could be correct, PANS/PANDAS molecular mimicry and the alternate fever response.

 

We have used sulphurophane (Broccomax) in the past with no obvious symptom changes, but from what I understand it may also be helpful in light of my kiddo's lovely liver-related polymorphisms.

Edited June 2, 2017 by wapiti

[PeterPan]

I've been pondering this all day but been too busy to post! Did any of the articles tell what *dose* they were using on the sulphurophane products? Does it standardize out to some kind of units, so someone can know if they're dosing at the therapeutic levels that were used in the study? And was the dosing relative to body weight? 

 

The articles I read had the claim that food source would never get you enough to get the effect, but again without the dose we can't verify that. 

 

The effectiveness seemed good but the side effects seemed high. Seems to me like it would be better to get it with food if possible. I know they're saying it can't be done, but the univ behind the study had stock in the supplement, mercy. A lot more can be done with food than they claim, especially if you rebuild digestion enough that someone is actually using what's in the food. It's more an issue that most kids wouldn't EAT the food. ;)  Of course I'll flip that and observe that some people struggle to take pills but eat food just fine.

 

I wonder to what extent "one hour of red-faced" (playing outdoors till you're good and hot and sweaty) can have that effect with the heat shock proteins. I guess you'd have to use a thermometer on your dc to know if they're hot enough. No clue. Given how sedentary some kids with ASD are (not in sports, etc.), whatever good CAN be gotten with plain old fashioned exercise might be lost on them due to not participating.

 

I found articles on Mercola, etc. mentioning it with sauna, but I assume the same thing happens with steam rooms. I do the steam room pretty religiously, but I've not taken my temp to see how high it goes. Now I'm curious, lol. Here they won't allow you in till 18. The sauna is not nearly as hot as the steam room.

 

I just think you have to go back to what will the client actually do for themselves and what are they willing to continue.

 

I think one article I read said something about language improving with the supplement, and that got a little crunchy odd to me. I'd need a rational explanation for that.

SaveSave

Edited June 2, 2017 by OhElizabeth

[wapiti]

Did any of the articles tell what *dose* they were using on the sulphurophane products? 

The article above linked to the clinical trial.  The dose info from the clinical trial:

 

Drug: Sulforaphane-rich Broccoli Sprout Extract

30 subjects will be randomly selected to receive sulforaphane-rich Broccoli Sprout Extract. The medication will be supplied and dispensed as No.1 size gelcaps (each gelcap containing ~ 250 mg sulforaphane rich Broccoli Sprout Extract, equivalent to ~ 50 µmol of sulforaphane). The dosage of sulforaphane will depend on subject's body weight:

 

Subjects with body weight less than 101 lbs will receive ~ 50 micromol sulforaphane per day (1 gelcap to be taken once a day)

Subjects with body weight 101 lbs to 199 lbs will receive ~ 100 micromol sulforaphane per day (2 gelcaps to be taken once a day)

Subjects with bidy weight > 199 lbs will receive ~ 150 micromol sulforaphane per day (3 gelcaps to be taken once a day)

 

Broccomax lists sulfurophane glucosinolate at 30 mg per capsule.  I'm not sure how that compares to the product in the study.  Source Naturals has a broccoli extract product that is 250 mg per tablet, 1000 mcg sulfurophane.  (I'm not going to try to convert umol to mcg or vice versa; I'd go with the 250 mg broccoli sprout extract per gelcap the study describes.)  (ETA, when our old ND had my ds on Broccomax for liver purposes, it was 1 capsule per day)

Edited June 2, 2017 by wapiti

[Guest]

What if some children have a tendency towards seizures (1/3 of the autistic population does), which may be dormant but may be awaken by this "treatment"? (see link in my previous post from Autism Speaks)

It was Autism Speaks' Paul Wang (Autism Speaks senior vice president for medical research) that also said that the dosage could not be met through food, and I quote:
"The amount of sulforaphane that was administered in the study is many times higher than you can reasonably get through food. Even sulforaphane-rich foods like brussels sprouts, broccoli and broccoli sprouts don’t have enough of the chemical to get you close. So eating these vegetables can’t be expected to improve autism symptoms. Within reason though, eating sulforaphane-rich vegetables is safe and healthy."

I can't see what his agenda would be, other than to help prevent those that may jump on the bandwagon without reading the study fully, or even think to research the risks. Some follow things simply because a friend of a friend said it worked for her child.

Then there's the issue of other medical problems the child may have that may or may not be known. Here's an example:
"Avoid overconsuming foods that can potentially interfere with thyroid function, including broccoli, cabbage, brussels sprouts, cauliflower, kale, spinach, turnips, soybeans, peanuts, linseed, pine nuts, millet, cassava, and mustard greens. These foods are healthful in general, so do not avoid them completely. Everything is reasonable in moderation."

From the University of Maryland found here:
http://www.umm.edu/health/medical/altmed/condition/hypothyroidism

We each decide what risks we are willing to take, for our own kids! I have never been a gambler; especially with my kids' health.

ETA: That is all I am contributing to this discussion.

Edited August 13, 2017 by Guest

[PeterPan]

39 Proven Health Benefits of Broccoli Sprouts and Sulforaphane - Selfhacked

 

It looks like people have been talking about this a while.

[nixpix5]

Yep, we see this with our son and have been documenting it for 6 years. We 100% autism has links to immunology responses and there is data to support this (hence why some people see a vaccine connection).

[Guest]

The autism/ vaccine connection has been discredited through studies. I had provided a link a few months ago.

Edited August 13, 2017 by Guest

[Guest]

https://www.autismspeaks.org/science/science-news/no-mmr-autism-link-large-study-vaccinated-vs-unvaccinated-kids

[PeterPan]

Yep, we see this with our son and have been documenting it for 6 years. We 100% autism has links to immunology responses and there is data to support this (hence why some people see a vaccine connection).

 

Just as a total aside, I know multiple people who didn't vaccinate who have kids with autism. It happens. Lotsa subtypes, lots of paths, and genes are genes.

[kbutton]

Just as a total aside, I know multiple people who didn't vaccinate who have kids with autism. It happens. Lotsa subtypes, lots of paths, and genes are genes.

 

And some of us had kids who were "different" from birth--it was very clear from day 1 that they were not typical even if it was hard to pin down what was different. 

[geodob]

I'm glad to see that this has sparked some discussion!

Where I would also note a related study, that was published just over a week ago.

Which used a drug for 'Sleeping Sickness' Suramin, and had the same effect on these 'Autism ASD issues'.

http://www.news-medical.net/news/20170526/Clinical-study-tests-100-year-old-drug-in-children-with-autism-spectrum-disorder.aspx

 

Though a most important thing that this highlights, is that these 'Issues' aren't the result of a broader dysfunction within regions of the brain?

Rather it is occurring at the level of the neurons/ nerve cells,

Which is what is effected by Sulforaphane and Suramin.

 

So that they unlock a potential, that is in fact in place.

Which basically relates to the signalling processes within our Neurons.

Though our Neurons have a complex defence process, related to our immune system.

That basically involves different Enzymes, creating and sending signals.

 

These 'signals', are created by different Enzymes.

While we arrange letters to form a word.  These Enzymes use different molecules, rather than letters.

So that they arrange molecules, to form a signal.

 

But these Enzymes don't know how to form these signals?  

While we have our DNA, that Enzymes use to build Cells.

We also have RNA, which Enzymes use as guide to create Signals.

 

What  Sulforaphane and Suramin highlight, is that these Social And Behavioural Issues, are occurring within the 'signalling process within the neurons'.

Rather than dysfunction within certain regions of the brain.

[nature girl]

This is all so fascinating...And, as our experience is with ADHD which in some ways is so similar to ASD, I've been wondering whether there might be a similar potential at the neuron level that might be unlocked (some of the issues we're not seeing remediated through stimulants.) On the surface, from what you've described, Geoff, it doesn't seem like there would be much correspondence since many of the signaling issues (between ADHD and at least moderate to severe ASD) are so different. But of course there is some correspondence behaviorally (and in brain structure) between the two disorders, so this makes me wonder whether they'll find better non-stimulant meds/supplements that can address the signaling in a less invasive way.

 

I wish I understood more about differences in brain structure vs. neuron connectivity. Brain architecture shows many similarities in the two disorders (and, interestingly, OCD), but there are differences in neurotransmitters. So the issues that can't be remediated through meds, such as emotional regulation, are due to brain structure differences, where other executive functions are due to neurotransmitter deficiencies. But why do we see both structural changes and neurotransmitter deficiencies in their brain? (Does one cause the other?) And what reasonably can we expect to remediate with future developments, and what will always be different? (Sorry for the tangent, just thinking out loud.)

[wapiti]

When I first opened this thread the other day, I thought it was going to be about suramin, which has been in the news recently.  It's fascinating and might provide a big clue.  However, I've also read some concern that suramin may re-set the signaling molecules only temporarily, until whatever conditions resurface that caused them to go awry in the first place.  (Still, we could really use a quick re-set over here.)

 

I wish I understood more about differences in brain structure vs. neuron connectivity. Brain architecture shows many similarities in the two disorders (and, interestingly, OCD), but there are differences in neurotransmitters. So the issues that can't be remediated through meds, such as emotional regulation, are due to brain structure differences, where other executive functions are due to neurotransmitter deficiencies.

 

I think it's much more complicated than this... it depends on what one means by "meds."  (So for example, in PANS world, one symptom that some people have is emotional lability, and PANS is primarily treated in a way very different from the world of psych meds with the focus more on immune situations upstream of the symptoms).

Part of the alternate fever response theory that I read (no idea whether other versions of the theory differ significantly on this) is that the neurotransmitter histamine (apparently produced only in a certain part of the brain, not the kind in the rest of the body) may be deficient, but it's not as simple as adding it or make existing amounts hang around longer like SSRIs do with serotonin in the synapse, but perhaps there is a way to back up in the chain of events to fix some sort of dysregulation occurring upstream.

Where I need to go back and read on this theory of alternate fever response is on the details of the interaction between, say, cytokines and the enzymes.

[maize]

Do you guys ever feel like you need advanced degrees in neurology, molecular biology, psychiatry, immunology, nutrition, etc. just to begin to have a hope of knowing how to help your kids?

Not to mention a time machine to travel to the future and find out the results of a few decades at least more research than we have now?

 

I sure do.

Edited June 4, 2017 by maize

[nature girl]

Do you guys ever feel like you need advanced degrees in neurology, molecular biology, psychiatry, immunology, nutrition, etc. just to begin to have a hope of knowing how to help your kids?

Not to mention a time machine to travel to the future and find out the results of a few decades at least more research than we have now?

 

I sure do.

 

 

Haha, yes. Plus another, oh, 10 hours added to every day to dedicate to reading studies and books and manuals, researching various other materials and websites, and attending conferences.

[Guest]

Some things worth noting from the article:

 

"Naviaux and colleagues do not believe CDR is the cause of ASD, but rather a fundamental driver that combines with other factors, such as genetics or environmental toxins. And suramin, at this stage, is not the ultimate answer.

 

Unlike treatment for African sleeping sickness, which involves multiple, higher doses of suramin over a period of time and frequently results in a number of adverse side effects ranging from nausea and diarrhea to low blood pressure and kidney problems, researchers said the single, low dose of suramin used in the ASD trial produced no serious side effects beyond a passing skin rash.

 

But the therapeutic benefit of suramin was temporary: Improvements in the treated boys' cognitive functions and behaviors peaked and then gradually faded after several weeks as the single dose of suramin wore off.

 

The primary import of the trial's findings, said Naviaux, is that it points a way forward, that suramin should be tested in larger, more diverse cohorts of persons with ASD. (Naviaux said his research has been limited by costs; his lab is primarily supported through philanthropy.)

 

"This work is new and this type of clinical trial is expensive," he said. "We did not have enough funding to do a larger study. And even with the funding we were able to raise, we had to go $500,000 in debt to complete the trial."

 

Larger and longer trials would include multiple doses of suramin over longer periods of time, allowing researchers to map whether improvements continue or if uncommon side effects appear when participant numbers are greater.

 

If Not Suramin, Maybe Something Like It

 

Andrew W. Zimmerman, MD, a clinical professor of pediatrics and neurology at the UMass Memorial Medical Center who was not involved in the suramin trial but is conducting similar research, described the study results as "very encouraging for the field of autism, not only for the positive effects of suramin for the children who received the drug, but also for confirmation of the important 'cell danger response.'

 

"As the authors point out, many genetic variants have been found in ASD, but few have led to specific treatments. The CDR includes a number of metabolic pathways that may be affected by a number of genetic mutations or by environmental factors that have effects epigenetically -- beyond the genes themselves."

 

The Food and Drug Administration has not approved suramin for any therapeutic use in the United States. It is not commercially available. Naviaux noted that new trials could prove suramin is not an effective ASD treatment. Its benefits may prove too limited over the long term, he said, or an unacceptable safety issue might arise.

 

But "even if suramin itself is not the best antipurinergic drug for autism, our studies have helped blaze the trail for the development of new antipurinergic drugs that might be even better," said Naviaux. "Before our work, no one knew that purinergic signaling abnormalities were a part of autism. Now we do, and new drugs can be developed rationally and systematically."

 

Levitt at USC agreed: "The suramin pilot study is too small from which to draw specific conclusions about the treatment, but there is no doubt that the pilot study reports positive outcomes for all five children who received the medication. The findings provide a strong rationale for developing a larger study that can probe functional improvements in children in greater depth."

 

The potential financial cost of ASD treatment using suramin cannot yet be determined for several reasons, the study authors said. First, additional trials are required to determine the effective dosage and frequency for different types of patients. Suramin is used much differently for treating sleeping sickness, but the cost for a one month course of treatment is modest: approximately $27. Second, the age of the drug means that, if approved, it would almost certainly result in cheaper, generic formulations, but there is no way to accurately predict how that would play out at this time.

 

John Rodakis, founder and president of the N of One: Autism Research Foundation, which provided funding support for the study, said that despite all of the necessary caveats and need for additional research, the findings are "promising, hopeful work for a community of affected families that have been given little in the way of answers by medicine." "

 

__________________________________________________

 

I think at this stage both studies are too small to be conclusive but interesting to follow and see where they lead.

Edited June 5, 2017 by Guest

[nature girl]

The potential financial cost of ASD treatment using suramin cannot yet be determined for several reasons, the study authors said. First, additional trials are required to determine the effective dosage and frequency for different types of patients. Suramin is used much differently for treating sleeping sickness, but the cost for a one month course of treatment is modest: approximately $27. Second, the age of the drug means that, if approved, it would almost certainly result in cheaper, generic formulations, but there is no way to accurately predict how that would play out at this time.

 

 

Ah, so this is why they don't have the funding for larger studies, because there's no money to be made...It seems crazy to me that promising research like this needs to be privately funded, and push the study coordinators into debt. This is the sort of thing the NIH should really be funding...I wonder why they haven't been able to get grant support?

[Guest]

Ah, so this is why they don't have the funding for larger studies, because there's no money to be made...It seems crazy to me that promising research like this needs to be privately funded, and push the study coordinators into debt. This is the sort of thing the NIH should really be funding...I wonder why they haven't been able to get grant support?

Perhaps the funding will come after the results they had! It will not be the first time that things play out that way. They obviously were unable to convince a drug company to sponsor the research pretrial.

[Guest]

Also, Sulforaphane is a drug that is already available in the US market for other treatments, unrelated to autism. Suramin is not. You have to look at things from all angles ;)

Edited June 5, 2017 by Guest

[Crimson Wife]

And some of us had kids who were "different" from birth--it was very clear from day 1 that they were not typical even if it was hard to pin down what was different. 

 

I'm not sure about from birth but definitely early in infancy. FB recently had one of the "on this day" memories where I talked about my then-4-month old spending at least a half hour trying to grasp the star off of the shield from a Captain America costume. At the time I posted, "What a persistent baby!" but now I can recognize it was ASD-related rigidity.

[Guest]

Private info, deleted.

Edited June 5, 2017 by Guest

[Guest]

Private info, deleted.

Edited June 5, 2017 by Guest

[kbutton]

I'm not sure about from birth but definitely early in infancy. FB recently had one of the "on this day" memories where I talked about my then-4-month old spending at least a half hour trying to grasp the star off of the shield from a Captain America costume. At the time I posted, "What a persistent baby!" but now I can recognize it was ASD-related rigidity.

 

We had a lot of rigidity from day one (feeding, diapering, baths, you name it--we quickly learned there was a right way and a wrong way, and you didn't want to see the wrong way). You had to do things just so to an extent that was not there with my other son or other babies i knew. But yes, a lot of things were hindsight--we were frustrated, stressed, and very demoralized, but we didn't have a way to describe any of it until we had a diagnosis. Lists of gifted characteristics got us partway there, but it didn't explain everything.

 

We also didn't get smiles much in spite of his being very alert and intent on figuring out everything around him. He maxed out on eye contact really, really fast. He would look at your face and sometimes your eyes very intently, but when he hit his limit, he'd turn his head, and you'd have to give him some "alone" time. 

[SarahW]

My interest was piqued when glutathione was mentioned.

 

I seem to be suffering Lyme-induced neuropathy, so glutathione has recently become important to me. But yeah, this stuff is crazy. We're talking tiny chemical compounds within cells here. I know some biochemists, and they're trying to figure this out. Macros and the mega-vitamins, easy. But these amino acids and how they're made, what they do, and what the body does with them? There's still so many question marks.

 

I don't know. My DH loves brussels sprouts, and Crazypants has always loved broccoli. I believe that on some level the body tries to get us to eat things containing nutrients it needs, so that makes me say hmmmm.... 

 

But I've never seen any connection between Crazypants having a fever and his ASD symptoms. But his outward symptoms are really mild.

 

So I'm swallowing handfuls of amino acid and vitamin supplements every day, in the hope that my nerves will stop being so wonky (and hopefully not die off completely) a few months from now. Seeing an effect takes months, yes. Besides the expense, getting a kid to swallow enough pills to mega-dose on these amino acids for a maybe-sorta improvement months down the line? I hesitate there. 

 

I'd be interested in seeing more research done. This is really interesting.

 

[kbutton]

My interest was piqued when glutathione was mentioned.

 

I seem to be suffering Lyme-induced neuropathy, so glutathione has recently become important to me. 

 

Total aside...my mother had some issues with neuropathy that had no explanation or obvious cause. They tried the usual supplements, but it turned out that magnesium is what she needed, not B vitamins. 

[SarahW]

Total aside...my mother had some issues with neuropathy that had no explanation or obvious cause. They tried the usual supplements, but it turned out that magnesium is what she needed, not B vitamins. 

 

 

I am supplementing Magnesium already. I think I have a good super-absorbing type from a good brand. But that's another confusing can of worms - how to trust that what is on the label is in the bottle. Getting top-of-the-line supplements is $$$$.

 

I'm following a protocol for diabetic neuropathy, based around ALA. There's scientific studies to back up that high doses of ALA reverses diabetic neuropathy in a statistically significant way. I talked to my doctor about this, but she can't prescribe ALA from the pharmacy, so me doing this treatment is all out-of-pocket, while the mild mask-the-symptoms pain reliever is prescribed and covered by insurance. This is so annoying.

 

So, yeah, same with this research into ASD. Pharmaceuticals won't fund research into a drug which could be marketed as a "supplement" if it does turn out that there's a naturally-occurring amino acid underlying all this. And if it is a "supplement" then doctors can't prescribe it, treating with it will be out-of-pocket, and the whole idea will be under the shadow of woo. This also annoys me.

[geodob]

Though an important thing about Sulforaphane and Suramin, is that they are acting on Cells, rather than the Neurons and Nerve Fibres.

But they cause a change in 'behaviour'?

Where the 'Immune response' in the Cells, is most likely what they effect?

Which in turn, effects such things as the ability to 'look people in the eye'.

We have thought of this 'looking away', as a response that comes from the brain.

But in fact, might be signalled by the Cells, rather than the brain?

 

That the behaviours are being directed by the Cells, rather than the Brain?

Where the Cells and the Brain/ Nervous System, work very differently.

 

Though the Cells are where our DNA comes in.

While DNA provides the Instruction manual.

It is the RNA that read the DNA manual and carries out the instructions.

 

What RNA does, is to direct the building of a multitude of different Proteins.

Each of which, is carried out by certain Enzymes.

What the Enzymes work with, are basically 20 different Amino Acids.

Each Enzyme, picks out its own Amino Acids, and arranges them in in order.

That forms a unique signal.

So that it's a bit like a 20 letter alphabet.

But they also use some minor amino acids, which might be thought of like commas, and apostrophes?

 

Though I raise this distinction between DNA  and RNA,  as it is the RNA that Sulforaphane and Suramin are most likely effecting?

While a DNA disorder, their is an error in the instructions.

But with an RNA disorder, their is an error in the 'reading and following of the instructions'?

 

The changes in behaviour that Sulforaphane and Suramin cause?

Strongly indicate that they are causing changes at the RNA level, with reading &/or following level?

[Guest]

Could you explain to me how non-medical therapies help change the eye contact issue? My 13 yr old was only ever mildly affected when he was younger. He no longer has that issue. My 8 yr old was more affected and he now has pretty good eye contact as well. They have had no outside therapies (other than what I/we have provided) and no medical treatments other than the gluten/ dairy/ soy free diet and basic supplements (fish oil, probiotics, multivitamin).

 

I don't know your background but you seem to be making a lot of assumptions here! Could you provide any links to help me follow your reasoning with more facts?

[geodob]

Marie, you asked if I could explain this helped change the 'eye contact issue'?

Though it has a broader effect, on what is defined under: 'Social (Pragmatic) Communication Disorder 315.39 (F80.89)'.

 

What actually causes these changes, is yet to be defined?

Though I have a hypothesis, that this is an auto-immune response, at the individual Cellular level?

Where certain RNA gene codes, are being inhibited from transcription.

But that it is only a temporary inhibition, while the immune system is 'on hold'.

 

Then when a Fever occurs, and it triggers the immune response in the Cells,   That this could 'unblock' certain RNA gene codes?

But this raises the question about why the immune system uses this articular response?

Though 'social removal', could be rationalised as a defensive immune response?

[Guest]

Your hypothesis is intriguing but, I feel, a bit oversimplified. I will be doing some further research though!

Edited August 13, 2017 by Guest

[lavender's green]

I'm really interested in this line of research. My aspie has always just been easier when he's feverish. I noticed it well before a diagnosis was on our radar. I've been aware of the fever effect in autism for a long time, probably before he was born, and it was one of the soft symptoms that nudged us toward seeking a diagnosis. It's not that he can't be calm, reasonable, pleasant, cuddly, social, focused, etc, when he's well...it's just that's his normal state when he's feverish. I used to think it was that he was just too tired to act up. His siblings, however, are complete grumps when they're feverish.

[nature girl]

ETA: Whoops! I'm following too similar threads simultaneously (while trying to watch Comey, lol.) I'll put this in the correct thread.

 

I have the feeling that it's one of those things where gut health is the main issue for some (and it makes me giddy that it worked so well for you!!), but probably not most. I know some kids are almost completely "cured" when food dyes, pesticides, gluten, casein, whatever are removed, some kids improve on extreme FOODMAP or GAPS or Feingold diets, but the majority just do not, despite the claims of the doctors selling them. In my mind, it's worth trying if you've noticed other body issues not related to the neurological issues, like allergies/eczema, digestive issues, frequent illness, fatigue, etc. But in most cases there are actual permanent brain differences at play due to their genes, and changing diet probably won't do much if anything to alter those.

 

I may just be jaded because we tried EVERYTHING before resorting to meds, DD was gluten and casein and dye and pesticide-free for 2 years, we supplemented out the wazoo, it all was extremely expensive, and did pretty much nothing. But I really have a hard time believing that the majority of these kids with structural brain differences, most of which are hereditary, can be cured through manipulating gut flora.

Edited June 8, 2017 by nature girl

[Guest]

nm

Edited June 8, 2017 by Guest

[Guest]

Stumbled across this and thought I would add it here and in the other thread. Some may find it interesting.

https://www.autismspeaks.org/science/science-news/immune-changes-linked-regression-gi-distress-repetitive-behaviors

[Tiramisu]

Having lived in Japan where very warm or hot baths are a daily occurrence, now I'm curious about rates of autism in places that have this custom.

[wapiti]

Geoff, if you (or anyone!) have any thoughts on the following, I'd be interested to hear them.  A new study came out the other day:  

Histamine modulation of the basal ganglia circuitry in the development of pathological grooming.  https://www.ncbi.nlm.nih.gov/pubmed/28584117

We report that specific ablation or chemogenetic silencing of histaminergic neurons in the tuberomammillary nucleus (TMN) of the hypothalamus leads to markedly elevated grooming, a form of repetitive behavioral pathology, and to elevated markers of neuronal activity in both dorsal striatum and medial prefrontal cortex. Infusion of HA directly into the striatum reverses this behavioral pathology, confirming that acute HA deficiency mediates the effect.

 

Might this idea hold water, that histamine as a neurotransmitter may have some importance in the world of OCD?

 

I am putting it together with this one is from last fall:  Histamine regulation of microglia: Gene-environment interaction in the regulation of central nervous system inflammation. https://www.ncbi.nlm.nih.gov/pubmed/27381299

 

the microglial response to challenge with lipopolysacchariade (LPS) is potentiated in Hdc knockout mice. Genetic abnormalities in histaminergic signaling may produce a vulnerability to inflammatory challenge, setting the state for pathogenically dysregulated neuroimmune responses.

 

I'm trying to connect the dots between infection (via LPS, I guess?) and the production of histamine in the brain (produced only in the posterior hypothalamus?) and, in turn, an insufficiency of brain histamine in the striatum - as a neurotransmitter - contributing to OCD.  But I'm still confused on the specifics of the dysregulated neuroimmune responses.

 

Alright, I'm going to add more confusion as to whether PGE2 increases or decreases brain histamine.  I have read some studies from the 1990s suggesting PGE2 increases turnover of histamine by increasing both HDC and HMT.  With PGE2 being stimulated by certain cytokines...(?).

Edited June 13, 2017 by wapiti

[nixpix5]

This is so incredibly fascinating! I spent some time reading up on this now that I know what to look for. This is EXACTLY what we see with our ASD son. Every time our son has a fever he is 100% neurotypical. All signs and symptoms of ASD vanish. As we are both neurobiologists we have often tried to determine a mechanism of action as we chat about it and we have even combed through pub med research trying to find any data on the phenomena. We just assumed it was just an interesting side effect for our little guy. So grateful for this post!

Edited June 15, 2017 by nixpix5

[geodob]

Wapiti, an important thing about your links and the previous one from Canadian Mom ?  

Is that they are identifying an immune response, causing 'Repetitive Behaviours'.

 

As the discussion until then, had been about Fever reducing the 'Social Communication Disorder'.

 

Importantly, these indicate that they are separate and different immune responses?

Which fits with your query about the relevance to OCD.  

 

While a Social Communication Disorder and Repetitive Behaviour are the main criteria of Autism.

In DSM-V, it also recognised that people may have the 'Social Communication Disorder',  but not the Repetitive Behaviour.

So that SCD can now be given as a diagnosis.  Separate from Autism.

 

Yet Repetitive Behaviours, have long been recognised as also being separate from Autism.

 

What this raises, is the idea of Autism as a combination of 2 different Immune Response issues?

[Guest]

Wapiti, an important thing about your links and the previous one from Canadian Mom ?

Is that they are identifying an immune response, causing 'Repetitive Behaviours'.

 

As the discussion until then, had been about Fever reducing the 'Social Communication Disorder'.

 

Importantly, these indicate that they are separate and different immune responses?

Which fits with your query about the relevance to OCD.

 

While a Social Communication Disorder and Repetitive Behaviour are the main criteria of Autism.

In DSM-V, it also recognised that people may have the 'Social Communication Disorder', but not the Repetitive Behaviour.

So that SCD can now be given as a diagnosis. Separate from Autism.

 

Yet Repetitive Behaviours, have long been recognised as also being separate from Autism.

 

What this raises, is the idea of Autism as a combination of 2 different Immune Response issues?

OK, this line of reasoning I can follow. Need to do more research :)

[wapiti]

More about the immune system and OCD (if you all don't mind if I put this here?):

Inflammation in the Neurocircuitry of Obsessive-Compulsive Disorder http://jamanetwork.com/journals/jamapsychiatry/fullarticle/2631893 (published 6/21/17)

To our knowledge, this is the first study demonstrating inflammation within the neurocircuitry of OCD. The regional distribution of elevated TSPO VT argues that the autoimmune/neuroinflammatory theories of OCD should extend beyond the basal ganglia to include the cortico-striato-thalamo-cortical circuit. Immunomodulatory therapies should be investigated in adult OCD, rather than solely childhood OCD, particularly in cases with prominent distress when preventing compulsions.

 

This is supposedly a "breakthrough" but as a pans/pandas mom, my response is, "well duh."  It is about time the inflammation angle is explored further.

 

***

On alternate fever response, my reading today involves trying to figure out fever vs heat shock, heat shock protein and the role of antibodies against it - autoimmunity?  Or, are antibodies to heat shock protein stimulated by a pathogen subverting the immune system to its benefit, as pathogens are wont to do?  I noticed something in my kiddo's bloodwork where anti-68kd popped positive at the height of our IVIg infusions; apparently that also represents antibodies to HSP 70, a heat shock protein.

On alternative fever response generally, ibuprofen tends to be somewhat helpful, at least takes the edge off a tad.

Edited June 23, 2017 by wapiti