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Thursday 14 February 2019

More Politics of Autism, the NCSA, Prader Willi, Happy Puppets and the Crazy Car Wash


Kempton Park Racecourse, near London - now known for its Hot Dogs

A science-heavy post about microglia is in the works, but today’s post ties together some less complex issues.
As I mentioned in an earlier post, there is a new book out called the Politics of Autism, by Dr Siegel.
I did buy 2 copies, so I could give one away. It is a bit heavy going and I did skip some parts, but it is as expected a good read. The author does personally know/knew some of the “big names” in autism like Lovaas and even Bernie Rimland.
I was interested to read that Lovaas basically cheated in his famous ABA “clinical” trial, where he showed amazing responses. All the trial participants that did not develop speech during the trial were “retired” during the trial. He rigged the result, by removing those less responsive to the trial therapy.  If you follow this subject, you will know that some Americans and Canadians get very upset when intensive ABA is not provided for free to their child, believing that it would likely "cure" their child, like in the Lovaas study. This trial is constantly used to support the idea of intensive early intervention producing dramatic life changing results.  In most people with severe autism, no amount of behavioural intervention is going to change the fact that they are severely autistic. It does though make many such people more functional, which can greatly help them. Expectations need to be realistic and parents should not feel guilty if they cannot provide many years of therapy costing $60,000 a year. You can achieve a great deal at much less cost.
Siegel thinks that Bernie Rimland (of ARI and DAN!) started out well and then went a bit dotty.
She makes excellent points about education.
She makes the mistake of venturing into the realm of medicine, which is clearly not her field and tells readers not to bother trying to treat the biology autism. 10 years ago I would have been mistakenly backing her up on this, but then I had my epiphany, thanks to reading about Professor Ben Ari’s small clinical trial of Bumetanide in 2012.

Who should buy the book?
This is not a feel good book, it is a very down to earth book that tells the story as it is, not the sugar coated version.

I thought this book would be good for people who study autism at University, like one of Monty’s assistants; she now has copy number two.
Many people with Asperger’s would likely hate this book and think Dr Siegel is a witch.

I thought most parents of people with severe autism probably do not want to hear more about how bad things are, but perhaps I was wrong. Dr Siegel provided one of her old posts as a guest blog post for the newly formed National Council on Severe Autism (NCSA).

The NCSA is a new group set up to represent what used to be autism, before the diagnosis got broadened. They are really all about DSM3 autism, or what we called Strictly Defined Autism (SDA).



Horror stories or just telling it how it is?
Some people with mild autism seem to be very upset by what NCSA are advocating, but that is hardly a surprise.

Decide for yourself whether you consider the NCSA to be spreading horror stories, or just telling it how it is.
An attention-seeking UK daytime TV “celebrity” has a son with Prader Willi syndrome and he is regularly described as having autism.  Prader Willi is associated with an insatiable appetite which, if uncontrolled, leads to obesity; reduced IQ, impaired vision, behavioural problems and a bad temper. It is caused by an anomaly on chromosome 15, which causes a loss of function of some of those 600 genes.

75% of cases occur when part of the father's chromosome 15 is deleted.  In another 25% of cases, the person has two copies of chromosome 15 from their mother and none from their father. As parts of the chromosome from the mother are turned off, they end up with no working copies of certain genes
A similar mechanism occurs in Angelman syndrome, except the defective chromosome 15 is from the mother or two copies are from the father.


People with Angelman’s have small heads and are not obese; because they are generally very happy, they are sometimes called Angels.  The condition used to be called Happy Puppet Syndrome, which apparently is not seen as politically correct these days. I should add the Prader Willi could be called “please lock the fridge syndrome”, because if you do not remove food the child may become severely obese before he/she is 10, develop type 2 diabetes, rapidly become insulin dependent and then have even bigger problems.
The Prader Willi mother is campaigning for disabled people’s rights, which is of course a nice thing to do; she is against abuse/trolling on the internet.  She recently revealed that at 16 years of age, her verbal, but obese son cannot wash or dress himself and no longer attends school regularly, because he has learnt that by having an early morning meltdown, the driver will refuse to take him to school. Like many teenage boys he would rather stay home than go to school.

The mother says she is concerned he is missing out on schooling.
I dare say Dr Siegel would ask what kind of schooling is this 16 year old getting? Perhaps learning to wash himself and dress should first be mastered.  In someone without severe MR/ID this is a matter of correct instruction and unlimited perseverance, by someone.

Dr Siegel could repurpose her blog post again, this time:

Diagnose and adios? Prader Willi families deserve better

The mother says she is thinking of putting her son into residential care. That sounds great, but who is then ever going to teach him to wash and dress himself and restrict his eating? If Mum cannot, why would some employee earning near minimum wage in a care home make a better job of it? What happens when he starts to need insulin injections twice a day, because obesity was not addressed?
Sometimes horror stories do not reflect the child, but how they are being cared for and all with the best intentions.  Most such parents need help, indeed it’s to be expected. This all could be solved by some home visits from someone like Dr Siegel.  More of these people do exist; our Greek-American ABA consultant would give very similar advice to Dr Siegel. Avoiding school would not be tolerated, regardless of any meltdown. Someone with an IQ>60 definitely can be taught to dress himself, even if occasionally a shirt goes on back to front.  Food has to be restricted.

Monty's morning assistant at school works with many other kids with autism and from what she tells me, it is clear that many issues repeat, even the publicity-hungry mother who ends up failing her own child. Since our morning assistant is writing a self-help manual for parents dealing with severe autism, I can imagine where my other copy of Dr Siegel's book is destined to go. At least my autism intervention library is being put to further use.
It should be noted that some autism mothers react very dynamically. We have one reader who identified a novel effective drug therapy for her child and is now trying to commercialise it, we have another reader who has inspired and funded research into what was a rarely studied genetic "autism". Parents react very differently to the challenge of raising a child with a severe disability, in some it brings out the best.  It is not just about having a high IQ, or a lot of money.
Some people cannot afford to pay for such 1:1 advice, but many might choose to, if they knew it existed. In many countries, like some provinces in Canada, families dealing with a disability are given substantial financial resources to help themselves. In Ontario there is currently uproar on the proposed $140,000 cap on free autism therapies per child. That is $140,000 more free money that we received. I recently calculated our total cost of autism up to the age of 16 and when converted into Canadian money it is $190,000. They should of course have different limits based on different levels of severity. In the DSM5 jargon you have 3 levels of need/severity and so you could have a low limit for level 1, since Aspies do not benefit from vast amounts of ABA, say $20,000 and a high limit for level 3, say $250,000. Then wait for the surge in (re)diagnosis of level 3 autism in Ontario.

            Diagnosing for Dollars (click, for Dr Siegel's take)
Many “horror stories” appearing on the NCSA forums likely could be avoided by applying personalized medicine, rather than cookie cutter medicine, or standard psychiatric medicine. 

Kids with undiagnosed genetic disorders 
I am not a doctor, but I do quite regularly get to play guess the undiagnosed metabolic/genetic disorder.  The latest one is what would cause deafness and hypertonia and apparently no other symptoms.

I recently read that US medical insurance generally will not pay for genetic testing for autism, because there are no therapies.
But yet there sometimes are, if you look.

Look at the recent comments in this blog about a child whose genetic testing revealed a problem with the KCNQ3 gene, which encodes the Kv7.3 potassium ion channel. You can look up Kv7.3 channelopathy, or just the KCNQ3 gene.
This is at least partially treatable just by using google and the excellent Genecards human gene database; both cost absolutely nothing.


You can both activate and block this ion channel.  You will need one or the other.


Jobs for adults with Autism
You do quite regularly hear about how an IT company like Microsoft, or a big bank is actively recruiting people with autism. This always makes me laugh.  IT jobs for Aspies - yes of course, but autism?

People with DSM3 autism are not commuting to work reading the Wall Street Journal, or the Financial Times; but there should be things they can do.
Many years ago there used to be special companies set up to employ disabled people. This became not politically correct, for some reason.

Remploy is an organisation in the United Kingdom which provides employment placement services for disabled people. It is now a “welfare-to-work provider” finding jobs for disabled people, but for most its existence it directly employed disabled people in a number of factories, owned by Remploy itself, and subsidised by the UK government.  This was phased out at the start of the 21st century, under the prevailing view that disabled people should have mainstream jobs.

Sadly, many disabled people cannot hold down a mainstream job.

You might recall Andreas Rett (of Rett Syndrome), as well as being a doctor, established a factory in which neurologically disabled youngsters could work. That was 50 years ago.

One supermarket chain where we live sometimes has young people with Down Syndrome, or MR/ID helping to pack your groceries.

Monty’s afternoon assistant was telling me how sad it is that one Aspie her age is still without any job. My reply was that someone has to create him a job, just like we will have to create Monty a job.
I am a big believer in developing musical and other artistic skills, it did not get the above Aspie a job, but it does give him something to do.

Our very worldly Greek-American ABA consultant told me long ago that the biggest problem “her kids” face, as they grow up, is that they have nothing to do with all their time.  No job and no hobbies is not a good combination.
As I write this text, Monty is downstairs drawing a frog. Before that he was playing all the melodies in his current piano book.  Before that he washed his Mum’s car and earlier on we were washing my car.

Monty’s Crazy Car Wash
You gotta be a little bit Crazy to work here!
You gotta be totally Crazy not to try it!

I think Monty will end up more capable than having a car wash, but it is quite a suitable job for many young people with DSM3 autism. It is a genuine job, whereas packing groceries is not and the Crazy Car Wash is a lot of fun.

Good journalism?
There are very few journalists who are credible when they write about autism; they generally do not understand it at all (you cannot blame them for that!); then there are some Aspie ones, who will by definition tend to lack empathy, and they can completely fail to understand the severe end of the spectrum, often in a jaw-dropping fashion.

I rather liked this article by a 28 year old journalist taking charge of her 24 year old sister with autism, for the first time and going for a girls’ weekend riding horses.


I wonder at what point my 18 year son will be taking charge of his 15 year old sibling with autism, for a boys’ weekend. Hopefully I will not need to wait 10 years.
I expect it will be something eventful like Tom Cruise and Dustin Hoffman on a road trip to Las Vegas, in the excellent, but nowadays much maligned, film Rain Man. Bernie Rimland was the autism advisor for this film. 

This Christmas in London on December 26th, Monty asked me if he was going to be having a hot dog for lunch; leaving me to ponder where did that idea come from. He accurately recalled that 12 months previously, on Boxing Day, he had gone with Uncle Stuart and Dad to Kempton Park for a boys’ day out at the horse races. The weather is usually cold and damp (i.e. miserable), but you do get to have a hot dog.


Conclusion
If you can take the sometimes brutal honesty of describing things as they really are, then Dr Siegel’s new book is going to be appreciated and you will also like the new US National Council on Severe Autism. 

A sense of humour will do you much more good than political correctness ever will. Upsetting people can sometimes be necessary to enable them to acknowledge their own delusions. I am beginning to sound like Dr Siegel, who likely would take her car to the Crazy Car Wash, should Monty open a branch in California.
It is up to parents to stop their child becoming obese, even more so when they have a genetic propensity towards this condition. 

If you do not have $60,000 a year to pay for ABA and feel you are missing out, make your own intervention program instead. Buy some books and recruit some helpers.  Don't spend years fuming in a waiting list, pondering what might have been.










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27 comments:

  1. Hi Peter, I think that the safest thing is to create the work tailored to our son, for the future. Iam waiting for the post about microglia, I just have ordered gastrodia elata, tian ma. Also read an article very interesting about HHV6 mediated diseases, presented as a timeline, starting with roseola as a baby, then after vacinnes, ASD ( my son's case) and then adult MS, are part of the same disorder. The cells required for myelination are infected with HHV6. Could acyclovir be useful to avoid future problems or inhibit virus replication?
    Valentina

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  2. Valentina, you do ask complicated questions.

    Below is a summary of drugs that do show promise in reducing the acvtivity of this type of virus. One substance you recently highlighted, artemisinin, appears. That was in the context of using an old Chinese malaria therapy as a novel MS therapy and you suggested why not autism. That is interesting, isn't it.

    As you point out the activation of HHV6, which is present but dormant in nearly all of us, does appear to play a role in how MS is initiated and then develops. It many well play a role in many diseases. A virus can affect the expression of many genes.

    You will see below that Ganciclovir is far superior to Acyclovir.

    You can measure the level of activation of HHV6, it is present in a dormant state in nearly all of us.

    Review, part 1: Human herpesvirus-6-basic biology, diagnostic testing, and antiviral efficacy.
    https://www.ncbi.nlm.nih.gov/pubmed/20648610

    At present, no antiviral drugs have been approved for the treatment of HHV-6 infection. Currently, anticytomegalovirus drugs such as the nucleoside analog valganciclovir, the nucleotide analog cidofovir or the pyrophosphate analog foscarnet are used to treat HHV-6 infections, because in vitro studies show that they also have activity against HHV-6 [De Bolle et al., 2005]. Ganciclovir is far superior to acyclovir for treatment of HHV-6. However, ganciclovir is less effective against HHV-6B than HHV-6A. The most effective available compound against HHV-6 in vitro is foscarnet.
    Harma et al., 2006]. Two types of other antiviral drugs demonstrate anti-HHV-6 activity and potential, but have yet to be clinically tested or commercialized: the nucleoside/ nucleotide analogs S2242, A-5021, cyclopropavir, 3-deaza-HPMPA; and the non-nucleoside analogs including a benzyl-fused aryl sulfone derivative, CMV423. A summary of their anti-HHV-6 efficacies and cytotoxicities is presented under Table II. Of all these compounds, CMV423 is the one that displays the greatest anti-HHV-6 activity with a very good selectivity index. Interestingly, CMV423 does not appear to directly target HHV-6 proteins, since inhibition by CMV423 is cell type dependent. CMV423 has anti-HHV-6B activity that is 1700 less in Molt3 that in SUpT1 or cord blood mononuclear cells [De Bolle et al., 2004]. The presumed target of CMV423 is a cellular protein tyrosine kinase that has not yet been identified, and that plays an important role in the early phase of HHV-6 infection [De Bolle et al., 2004].
    Artesunate is a derivative of artemisinin, which is the active compound of the Chinese herb Artemisia annua. It is used widely for the treatment of malaria, has in vitro activity against several herpesviruses, and in vivo activity against CMV. The mechanism of action is unknown but may relate to inhibition of immediate early proteins via activation pathways involving Sp1 and NF-kB [Milbradt et al., 2009].

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    1. Thanks Peter! Sorry for the kind of questions, I am connecting the dots! It seems that HHV6 B is the one aquired early in childhood, also associated with temporal epilepsy, would be the one that matters most now. HHV6 A is more related to MS. Artesunate, the drug, is the one that has more antiherpesviral potency. Artemisinin is inactive at least against HHV6 A, I don't know if it works against HHV6 B.
      Valentina

      Delete
  3. I've been looking at piracetam, initially for NMDA enhancement, but I know it will be impossible to get prescribed where I live.
    I've tried to understand its mode of action, but all I find are fuzzy references to its effect on brain oxygen consumption. Does anyone in the community know more than me on this? Are there any decent alternatives (cocoa??)

    /Ling

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  4. Ling, nootropicsdepot sells it, it is easy to get hold of unless customs in your country do very good checkups at border.

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  5. Forgot to add, the MOA of racetams is very complex and has lots of modes of action, but from what I know is that:
    a. it depends upon the adrenals and require endogenous cortisol.
    b. increases mitochondrial membrane potential
    c. increases interhemispheric communication through the corpus callosum
    d. upregulates both AMPA and NMDA receptor densities
    e. can help with motor disorders, I noticeably had better fine motor control, it can improve dopaminergic deficits.

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    1. Thank you Aspie, you are a gem. :) I remember you posting on your piracetam experience here somewhere, I will have to dig that post up soon.

      I think combining piracetam with D-/L-serine might be better than just a serine regarding NMDAs.

      /Ling

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    2. Hi Ling,

      Yes it has a pronounced social effect on me, however I find that its only acute, the duration lasts between 2-4hours and it starts working after an hour or so.
      It definetely made me more happy and I felt more reward from doing things, however piracetam is also known to drive some people into mania.
      Its the one of the only racetams that didnt make more aggressive/rushy thinking, in fact it made me more kind.

      Delete
    3. One thing I should add though, my neutrophils and trombocytes have been dropping lots compared to 2-3 years ago, they were even below bottom range a few times around the time I got sick.

      I wonder if theres a connection with my somewhat heavy piracetam use (5-10gram some days) and the neutropenia/low trombocytes like symptoms.

      See here:

      Piracetam-induced immune thrombocytopenia
      https://link.springer.com/content/pdf/10.1684/epd.2011.0438.pdf

      Psychoimmunomodulatory effect of phenotropil (thats piracetam) in animals with immune stress.
      https://www.ncbi.nlm.nih.gov/pubmed/22442801
      "We studied the effect of phenotropil (25 mg/kg intraperitoneally, 5 days) on the immune and psychoemotional state of Wistar rats with LPS-induced immune stress. Hyperactivity of the immune system in animals after treatment with Pseudomonas aeruginosa LPS (100 μg/kg intraperitoneally, 3 days) manifested in a significant increase in the delayed-type hypersensitivity index, antibody titer in the reaction of passive hemagglutination, and phagocytic activity of peripheral blood neutrophils. Locomotor, orientation, and exploratory activities were reduced, while anxiety increased in animals with immune stress. Phenotropil exhibited the psychoimmunomodulatory effect under these conditions, which manifested in prevention of anxiety and fear response, increase in horizontal locomotion and exploratory behavior, and improvement of immunoreactivity."

      Piracetam Attenuates LPS-Induced Neuroinflammation and Cognitive Impairment in Rats
      https://link.springer.com/article/10.1007%2Fs10571-017-0468-2

      Piracetam attenuates binge eating disorder related symptoms in rats
      https://www.sciencedirect.com/science/article/pii/S0091305717304884?via%3Dihub
      Highlights

      Compromised normal feeding behavior during binge eating disorder restored by piracetam


      Piracetam ameliorated altered neurotransmitters associated with binge eating disorder.


      Piracetam showed anxiolytic activity and also alleviated cognitive deficit observed in BED.


      Piracetam decreased BED-induced increase in corticosterone levels.


      Piracetam restored the BED-induced alterations in leptin and ghrelin.

      Delete
  6. So, here the news from us. We have received the Cunningham back with positive AntiTubulin and CamKinase. We are looking for an expert to guide us through the process of solving this part of the puzzle, currently our highest candidate is Russell Dale from Australia. It has to be an immunologist since my child is on immunomodulators which have so far provided the biggest leap, and this needs consideration in developing our new therapy mode. The USA seems to have a lot of "Functional MDs" treating Pans, a handful of neurologists and even less immunologists. Those few charge exorbitant prices for their consults which I don't have anything against, but then when you read the reviews, they don't sound worth half that money. I also cant quite shake the feeling that a doctor charging 1000 USD for one hours consult for a child with a rare problem which not many doctors treat is not really up my alley morally. 500 would make him rich too. If anyone has a suggestion, please say so.
    I have seen more and more extremely positive results shared by parents doing stem cells (commercial products from Predictive and Invitrx). Its hard to dimiss 100+ drops in ATEC in a year as either a subjective thing or a coincidence. Luckily for us, our cells are en route to Duke, so that will happen quite soon. Stem cells seem like such a handy option, where nobody has to know (except for them) what they actually do, or what autism really is, they just fix it.

    We just came back from our traditional African vacation in January, and during that time our kid started swimming (no technique, just paddling as best as she can) and developing more of a stamina with a bike with training wheels which she was riding around the resort. it was also lovely to see her tell us constantly what she wants to do next..how amazing to not have the responsibility for her having fun.

    We resolved quite a bit of her issues from December by giving ibuprofen since she lost 3 baby teeth in December. Awaiting stem cells, we will only add whatever the PANS therapy is and buy an Ion Cleanse. Though there are no reasons why it should, it apparently helps people and is harmless. Though it irks me that now Fecal transplant is available in Bratislava...If it was last year I would definitely go do it, but with the stem cells so near now, I just don't know when to fit it in or whether its a good idea so close to each other.

    OCD tendencies are popping up everywhere, she now doesn't want to sit on a wooden chair without a pillow, wants her jacket zipped up all the way and cant stand to get a stain on herself. Interestingly, all these things sometimes don't happen. Intermittent OCD I guess!


    When people talk about the future of children with mild autism which are neither here nor there, I am not that concerned for my child. Part of it is probably the age old system where the brain tries to worry about things it needs to right now. The other part is that my child is female, and extremely pretty, to the level that we get stopped by model scouts on the street. That can easily be a career in itself. I also think that most autistic people can be taught how to grow plants, the least social living things on Earth, and that is both food and a job right there. The third thing is - marriage. A woman (and probably a man too) can find safety, support, pastime and purpose in family life. Though my IQ is extremely high, I am socially not very adept, cant tolerate many hours of socializing and have ADD. This makes me not very happy in employment, but I am as I am told, an awesome mom and wife, which fulfils me too.
    Dear Peter, I have purchased my tickets for the TA conference and hope to hear you there!

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    1. I forgot to say...could Ling perhaps make a list of things she is using, with a short comment on why, and things she has used but doesn't anymore again with short comment?

      Delete
    2. Tatjana, that is not little you are asking for. :-)

      As said before, every autism is different and so not every intervention will help everyone. In my case I know the exact genetic cause, many of the symtoms associated with the syndrome, and some pathways that are involved.

      I am treating things like hypofunctioning NMDArs, oxidative stress, mito and bone issues.

      This includes symtoms like low cognition, bad memory, anxiety, OCD, severely affected receptive/expressive language, motor and balance issues, weak sensory system and a very happy mood.

      Does any of this apply to your daughter? Can low CamK mimic hypoNMDA?

      /Ling, really not answering your question

      Delete
    3. What struck my interest was you mentionung so many antioxidants. Those are of interest I believe to everyone here. My daughter has OCD tendencies getting stronger now, and receptive language issues much stronger than expressive.Shehas what I recently learned is called functional language, meaning she has a 600+ words vocabular she uses to get what she wants and to sometimes share her interest with us and comment on something, but very few sentences and conversational language. she has some fine motor and sensory issues but definitely no balance or memory issues - quite the opposite.

      Delete
    4. Peter has highlighted the link between OCD and oxidative stress here on this blog. In my daughter’s syndrome, many kids are hairpullers (trichotillomania), which is one of many manifestations of the OCD spectrum and also related to feelings of anxiety. There was a study where trichotillomania was ameliorated in 56% of the patients with NAC: https://www.ncbi.nlm.nih.gov/pubmed/19581567

      NAC provides the body with its “raw” antioxidant glutathione, and so it should be a substance helping people with oxidative stress, but it seems you need a lot of it. Most other antioxidant supplements like C vitamin are probably too weak to make any difference.

      On the other hand, NAC is just a fix of the acute, downstream problem of something else. This “else” could be excitotoxicity, caused for example by NMDAr hypofunction, which is reciprocally linked to redox imbalance (ask me for references). But, it could also be that something is going wrong with the endogenous antioxidant response. In autism, I would count on both these things happening.
      If you want to enhance the endogenous ability to deal with oxidative stress, some knowledgeable people will point you to NRF2. This is where sulforaphane appears as a treatment, and again, Peter has written a lot about it so I won’t. In my case, sulforaphane did raise energy levels but did nothing to trichotillomania and on top of that messed a bit with sleep in higher doses.
      Then I stumbled into another gene, ATF4, which happened to be down in my daughter and also appeared as the oxidative stress team partner of NRF2. When both work, you have a good oxidative stress defence during normal circumstances as well as during stress load. In addition to sulforaphane, the best interventions here would be fisetin (NRF2+ATF4) and bacopa (mainly ATF4).
      I should add that these substances have other roles as well. Bacopa will make GABA more inhibitory short-term but also enhance NMDArs after a while, so works well for some and not so good for others. NAC could be the alternative here.

      /Ling

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    5. For language issues (using grammar and not only words is certainly one aspect) my findings so far are published in the comments here:
      https://epiphanyasd.blogspot.com/2018/07/promoting-spontaneous-speech-in-autism.html

      If I can induce syllables again in my daughter with a bacopa+fisetin combo, I think I will be able to tie it to language issues in mitochondrial autism too, via the mito-variant of the unfolded protein response. I'll keep you posted.

      /Ling

      Delete
    6. Dear Ling, we used NAC a long time ago but were never able to get to the dosages Peter proposed because she would really have to swallow capsulea for that. 500-1000mg a day got us nothing. We used sulforaphane by Solaray with a slight increase in social openness. We recently introduced Prostaphane (french Avmacol basically) and nothing extraordinary happened. I will look into bacopa and fisetin.

      Delete
    7. Try Fisetin first, if you get any effect you will see it within days. Bacopa has small effect on GABA within two weeks, but for the effect on NMDArs you'll have to wait 8 weeks. Bacopa also has a bit bitter taste, I usually divide the dose between morning and evening to get less of it. It's a good way to test functionality in the brain based on behaviour through different weeks.

      /Ling

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    8. For anyone interested: I'm now upping the standard dose of Fisetin from 33 to 50 mg daily for my 18 kg-ish child.

      I have tried a 3-day course of 2*50 mg as well during the most critical teething days and it just worked wonders. Fastest teething ever and happiest too. Not sure it is the tooth being up or what, but she is having a small social/explorative lift at the moment, even daycare noticed.
      It would be interesting to know if this intervention could substitute NAC, because the effect lasts more than 4 hours (and less than 24 hours). Having read up on the subject, it looks like fisetin should be stackable with sulforaphane on NRF2.

      My only concern here is that combining this with Bacopa should have an impact on serotonin, and it is impossible to know at which point you get "too much". None of the compounds by themselves seem related to serotonin syndrome, but they complement each other very well.

      /Ling

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  7. Tatjana P--

    What is the TA conference?

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  8. Hi Peter, do you know about Pentoxifylline?,is a phosphodiesterase inhibitor, antiinflammatory and immunomodulator. I can get it here otc.
    Valentina

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    1. Valentina, Pentoxifylline is a “Methylxanthine” like caffeine and Theophylline.

      Theophylline is used for COPD and Asthma and I did write about it in this blog.

      Low-dose theophylline exerts an anti-asthma effect through increasing activation of HDAC which is subsequently recruited by corticosteroids to suppress inflammatory genes.

      This is why Theophylline works well with inhaled steroids, for those with severe asthma.

      I think both inhibition and activation of HDAC could be used in various different types of autism.

      These drugs do have side effects.

      Delete
    2. Peter, could I use pentoxifylline in a Pans pre adolescent to inhibit activated microglia long term? I think it can be safer than minocycline.
      Valentina

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    3. Valentina, wait for the next post which covers issues related to your question. Many drugs and indeed some supplements have potential to switch misbehaving microglia from M2 (bad) to M1 (ok) or M0 (best). This is a simplification.

      Delete
  9. Could exercise be good for the body but bad for the brain (for those with autism), see here:

    Exercise increases mTOR signaling in brain regions involved in cognition and emotional behavior.
    https://www.ncbi.nlm.nih.gov/pubmed/28130174

    Exercise makes me so anti-social (and the effect lasts for more than 3 days after a single workout), could mTOR activation be the cruelpit aswell? I mean autophagy is necesarry for pruning, something autistic people allready oh-so lack.

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  10. Would Monty be interested in photography? Just an idea...

    /Ling

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    1. He likes drawing, both things and patterns. It is actually quite a calming activity. His patterns would make good wallpaper.

      We did buy him a camera and he has a smartphone. So far he was never very interested.

      At school he makes models using clay.

      Delete

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