Doom Scrolling vs Taking Action - more Game Changers

 

Arnie (in the brown jacket) fixing a local pothole

Source: https://twitter.com/Schwarzenegger/status/1645886847342743552

  

Some actors can act and some cannot

I recently went to see Keanu Reeves in John Wick Chapter 4 with both of my sons. Big brother thought it was great, like a three-hour non-stop video game with Keanu Reeves laying waste to hundreds of villains. My view was that there was almost no dialogue. I have more dialogue with Monty, aged 19 with classic autism, than Reeves has in this film. It was rather like watching a film with Sylvester Stallone or indeed Arnold Schwarzenegger. For Monty I think the best part was probably the popcorn.

Big brother told me that Arnie can act, that is why he also made films like Kindergarten Cop.  That apparently is acting.

There is no doubt though that Arnie is a man of action, as well as being an action man.

I just got a link to him fixing a local pothole.  It is on his twitter feed. Not quite sure why I received it.

I forwarded the link to Monty’s Big Brother.

What does Dad have in common with Arnie?  We both go out and fix the pothole outside our house – the one that nobody wants to come and fix.

In our case I brought several bucket loads of steaming hot asphalt to fix the road. Arnie and his helpers used a few bags of cold repair asphalt – which looks a lot less bother.

When I went twice in search of asphalt, I explained to the road crews laying asphalt with a big machine that I just wanted a few bucket loads to repair an annoying hole in the road in front of our house. Both times the initial story was “you can’t do that ... you cannot fix the road yourself”. My approach, like Arnie’s, was “just watch me”.  The second time one of the road crew actually came to help.  Since then the whole road has been resurfaced, so my asphalting days are likely over.

 

Doom Scrolling

Even if you are not aware of the term "doom scrolling", if you have a smartphone you are probably already doing it.

 

Doom scrolling

The practice of obsessively checking online news for updates, especially on social media feeds, with the expectation that the news will be bad, such that the feeling of dread from this negative expectation fuels a compulsion to continue looking for updates in a self-perpetuating cycle.

 

It is similar to the echo chamber

In news media and social media, an echo chamber is an environment or ecosystem in which participants encounter beliefs that amplify or reinforce their pre-existing beliefs by communication and repetition inside a closed system and insulated from rebuttal.

 

These days many people have got hooked on reading about problems, rather than solving them. Severe autism being one such problem.

 

Taking action in Autism

I recently was contacted by a Dad who has been treating his child with autism for a few years.  He probably does not fix potholes like me and Arnie, but he does like to fix autism.  He is doing rather well.

He read my book and contacted me.  His very extensive investigation and trials resulted in his personalized therapy.  These were his game changers:-

 

SSRIs

Fluvoxamine         to treat OCD and improve cognition

(Luvox)

 

Antifungals

Fluconazole          The single most effective intervention. 

 (Diflucan)            It just lifted the fog.

Itraconazole 

          
Nystatin  

Antiviral

Valaciclovir (Valtrex)   

       

Antibiotics
Rifaximin               used extensively

 

Bumetanide             Improves cognition.

The antifungals and Rifaximin have the similar effect in terms of more situational awareness, “presence” and ability to interact.  Bumetanide improves cognition.

 

Vitamins

B1 (Sulbutiamine)   high doses (800mg) quickly solved the longstanding feeding problems like chewing and swallowing, the stubbornness (e.g. refusing to go through a door)

Another form of B1 has been covered in this blog. Benfotiamine was proposed by our reader Seth in 2016 and he wrote a guest post about it.

Benfotiamine for Autism

A researcher/clinician called Derek Lonsdale wrote about the potential to treat autism with vitamin B1. 

B6  high doses (> 150 mg a day) are essential to avoid explosive rages. 

Vitamin B6 with magnesium is an old autism therapy that was made popular by the late Bernie Rimland. Rimland founded and directed two advocacy groups: the Autism Society of America (ASA) and the Autism Research Institute. He was the force behind Defeat Autism Now! (DAN). 

Bupropion is transformative, but the effect unfortunately fades in 5 days. 

 The mechanism of action of bupropion in the treatment of depression and for other indications is unclear. However, it is thought to be related to the fact that bupropion is a norepinephrine–dopamine reuptake inhibitor (NDRI) and antagonist of several nicotinic acetylcholine receptors. It is uncertain whether bupropion is a norepinephrine–dopamine releasing agent. 

L type calcium channel blockers helped but Nimodipine caused side effects with gum inflammation; this is a well-known possible side effect.

 * * *

Fluconazole and Rifaximin are quite popular therapies in autism and certainly tell that something is amiss in the intestines.  In the US Rifaximin is very expensive and so you will see Vancomycin used.

In Singapore one of the US-trained MAPS (autism) doctors recently got in trouble prescribing Fluconazole/ Diflucan and Vancomycin to young children with autism. The kids' pediatricians heard what he was prescribing and complained to the medical regulator. 

 

Doctor ordered to temporarily stop prescribing antibiotics, antifungal medication to children after specialists complain

Dr Erwin Kay Aih Boon, a general practitioner in private practice at Healthwerkz Medical Centre, had prescribed antibiotic Vancomycin and antifungal medication Fluconazole – trade name Diflucan – to children with autism.

It comes after four paediatricians in a hospital, which was unnamed in the grounds, complained to the Singapore Medical Council (SMC) about Dr Kay’s management of children with autism.

They said his management of the children were “not based on evidence”, the grounds read.

“Hospital A’s paediatricians were of the view the use of antibiotics and antifungal agents for the treatment of children with (autism spectrum disorders) was unnecessary and had the potential for harm,” said the committee in its grounds.

 

Conclusion

It is rather addictive reading the news that appears on your phone.

Making your own news, even if you choose not to share it with the wider world, looks like a better option.

I was asked by one person who reviewed a draft of my book, why do I not include a collection of autism treatment case studies. I explained that most people who have been successful do not want to publicly share their results.  That is a pity, but it is human nature – why take an unnecessary risk? Even Dr Kay in Singapore gets himself into trouble, just trying to help other people.

In spite of there being no autism treatment gazette with hundreds of detailed case histories for parents to look through, there are nonetheless many clues in the published research.

The key point is that therapy needs to be personalized. Antifungals, antibiotics and antivirals might do wonders for one person, but do absolutely nothing for your child.    

The worst problem of all can be aggression and self-injurious behavior; vitamin B6 clearly works for some, but most people will need one of the numerous other therapies.

 

Game Changer - the Epiphany ASD book on autism

  

 

My autism book has been published.

It is currently available via all Amazon websites as a paperback book, or eBook for Kindle.

In a few weeks it should become available via BookDepository.com, which gives free shipping to most countries worldwide.  

When the book is more widely available, I will make another post about it.  

Reviews

 

 Audrey Davidow, Pitt Hopkins Research Foundation:-

Too much promising science in the Autism field simply languishes in the lab, never making its way to clinical trials. Luckily for all of us special needs parents, Peter Lloyd-Thomas has done the translation for us, running his own n-of-1 trials on his son to share with the rest of us his vast knowledge on the subject - knowledge that goes beyond that of any doctor I've ever encountered in my 11 years on this journey. This book is a manual every doctor, scientist and parent should read, offering many promising interventions rooted in science. But at its core, it is a book of hope – a book that reminds us to never give up on our children who are so desperate to learn, grow, communicate and develop meaningful relationships, just like the rest of us. Peter understands what many doctors don't seem to grasp; there are tangible ways to help our children, right now. Not in 10 years. Not once years’ worth of clinical trials are complete. NOW.  And his book is the ultimate bible for just how to do it.

Agnieszka Wroczyńska, a doctor and a mother of a child with autism and significant comorbidities, requiring substantial support :-

While there may be many different views on the essence autism spectrum disorder it is undeniable that ASD is associated with high unmet medical needs and lack of adequate translation of research findings into clinical practice. This book is a very good starting point to understand how you can use available scientific evidence to improve your child's quality of life. The book does not give all the answers, but it will help you ask the right questions.

 

How to use this book and what it offers 

(this is based on feedback from those who read the draft version of the book)

 

·    This book is written for those people who want to treat any debilitating symptoms of autism and common comorbidities, including intellectual disability. 

 

·    The book is much less complicated than the associated blog.  It is written in the style of a novel not a scientific paper.

 

·      There are plenty of topics covered and personal anecdotes that have no science involved.

 

·      Read only what you want to; skip over any parts that don't matter to your circumstances. The book does repeat itself sometimes because it is assumed that people will read selectively, based on what is most useful to them. 

 

·  Understand that this book is focused on personal experiences, including interactions with a wider community of people looking for answers. This means a lot of ground is covered but some is left out. 

 

·  Understand that this book is focused on what can be done for the brain, which is, of course, connected to the rest of the body; however, that focus means that some information is not included.

 

·   Make use of the blog, which is searchable, and contains far more detail and information. Throughout the book you will be given suggestions as to how to use search terms to access specific information on the blog but you can do this this for any topic. https://www.epiphanyasd.com/

 

·    Google terms that are new to you, but don't be concerned if you cannot understand the more scientific ones. Not completely grasping terms like DHCR7 will not impede your understanding of the book. 

·      The index is meant to benefit you for finding all the references to a single topic. 

 

 

 

 Contents of the book

The Author	1
Preface Why I wrote this book	3
Part 1 – Living in a Bubble	7
A personal journey into adulthood
Part 2 – Tips and Tricks learnt along the way	41
Another easy read
Part 3 – Autism 101	131
A simplified overview of the science and its application to better understand autism
Part 4 – Treating Autism using Personalized Medicine	195
An introductory perspective to a complex subject
Part 5 – A to Z of Drugs used in Autism Clinical Trials Who thinks there isn’t enough autism research?	243
Part 6 – Preventing Autism	291
What to do about the autism tsunami
Take Home Message	309
Index	311

 

 

Details of the paperback book and eBook

 

Game Changer is available as a paperback book

·         Paperback ‏ : ‎ 330 pages

·         ISBN-13 ‏ : ‎ 979-8847843287 (International Standard Book Number)

·         ASIN ‏ : ‎ B0BRJ88RJD  (unique stock number for Amazon websites)

 

And as an ebook for anyone who has the Kindle software on their tablet/phone or a Kindle device 

·         ASIN ‏ : ‎ B0BRQVB1J3 (unique stock number for Amazon websites)

·         Print length ‏ : ‎ 388 pages

 

How to obtain a copy of the paperback book?

 

1.     From your local Amazon website

Larger Amazon markets like the US, UK and Germany have their own Print on Demand facility and can print and ship the book very quickly.  In the UK it takes in 1-3 days, a few days longer in EU.

For some Amazon markets, like Canada, it takes a few days longer. For Canada, the books are printed in the US. For Hong Kong Amazon delivers cheaply from the US.

Shipping from an Amazon website to most foreign countries can get expensive.  It is better to use the Book Depository website, when the book gets listed there.

To find the book on your local Amazon site enter

“Game Changer Lloyd Thomas”

or

Amazon’s product code B0BRJ88RJD

or 

by the book's IBSN 979-8847843287

Direct links to the book for some Amazon sites are below:

USA

Canada

UK

Game Changer or Fine Tuning? It depends on severity of Autism

 

There are so many possible autism interventions discussed in this blog, it clearly is not always easy to know their relative merit.

There are so many people now diagnosed with autism it is no longer such a meaningful term.  The most extreme autism I think I will have to start calling really severe autism.  A scale of 1 to 100 would be much more helpful than the current levels 1, 2 or 3. I suppose Elon Musk and Greta are level 1.

One reader did recent describe the effects of bumetanide in his child as being game changing.  I think it is an excellent description to use.  For our reader Roger, Leucovorin was a game changer.

Another reader wrote to me to give an update about his three year old

“After 3 months of bumetanide treatment I've seen improvement on his cognition, like, he is now able to finish an apple and take the end to the trash by himself or enter in his room, turn the lights on, take some toy, turn lights off and close the door or eat his lunch by himself. He is smarter now.”

This reader is well on his way to finding the additional elements for his son’s personalized polytherapy and the way he is going about it is likely to yield optimal results. Most of what you need is tucked away in this blog somewhere.  It is a case of who dares wins.

Using my scale of 1 to 100, with Elon and Greta in low single digits and many people referred to at the blog of the US National Council of Severe Autism mainly at 80-100, we can put interventions into a bit more perspective.

It is still far from perfect because most people with really severe autism reach a plateau in development at a very young age.  This matters because as a three year old they do not look/behave so differently to a typical child, but by the time they reach 18 years old, the difference is gigantic.

If you could delay the onset of this developmental plateau for a decade the result would be transformative.  Based on the longitudinal studies to adulthood, it looks like about 80% of severe autism reaches a plateau at the level of a 2-3 year old.  The other 20% continue to learn, but at a slower rate than typical children. 

In the case of the autism which is <10, like Greta and Elon, very small issues can still become very troubling.  There was inevitably bullying at school from mild to severe, there likely was (and still is) anxiety, perhaps an eating disorder, perhaps some self harming or even suicidal thoughts.

If you fine tune the brain a little to reduce anxiety and improve social/emotional responsiveness, you can trim someone’s score from a 15 to a 9 and make them feel much better.  Job done.

For someone with an IQ of 50 (i.e. severe intellectual disability), non-verbal, non-literate, who is sometimes aggressive and exhibits autistic behaviors, you are going to need much more than fine tuning, you need a game changer.  Then you can go on and fine tune things to give further incremental improvement.

One doctor reader did suggest to me that, in effect, five moderately effective interventions might equal one game changer.

In the case of autism that I deal with, the most important step was raising cognitive function, not treating what people consider to be autism.  I think that this applies to almost all people with a score 50 to 100.  Even if it was never actually diagnosed, the barrier to progress is low cognitive function and a severely reduced ability to learn and acquire new skills.  This has to be fixed and for many people the tools already exist.

 

Improving cognitive function

Game Changer

·      Bumetanide  (also Azosemide, KBr and, possibly, Betaine with the same effect of lowering chloride inside neurons)

Fine tuning

·      Atorvastatin, reducing cognitive inhibition

·      Micro-dose Clonazepam, shift E/I imbalance

·      Low-dose Roflumilast, raising IQ

 

Reducing autistic behaviors

Fine tuning

·      NAC

·      Sulforaphane

·      Verapamil

·      Oxytocin

·      BHB

·      Pentoxifylline

·      Agmatine

·      Clemastine

·      DMF

·      Leucovorin (Calcium Folinate)

 

Interventions with a slow course of action

Some interventions, for example pro-myelinating therapies (like clemastine and Tyler’s N-acetylglucosamine), or pro-autophagy therapies, may take a long time to show effect. I think you may need to first see very tangible results from other therapies, which are much easier to assess.

As Roger will want to point out, in the case of Cerebral Folate Deficiency Leucovorin was the game changer.

In the case of other metabolic autisms, a single therapy may also be the game changer, like the Greek boy for whom high dose biotin resolved his previously severe autism.

In the case of Fragile-X, there seem to be potential game changers galore.  The latest is plugging the leaky membrane in mitochondria that is allowing ATP to leak out, using a research drug dexpramipexole, or potentially the related and already approved variant Mirapex ER (pramipexole).  Mirapex is used to treat the symptoms of Parkinson Disease and Restless Legs Syndrome. 

If our occasional reader and bio-statistician Knut Wittkowski is correct, Mefenamic Acid (the NSAID Ponstan) could be a real game changer, if taken around 2-3 years of age.  He suggests this will block the progression to severe non-verbal autism. Knut has been upsetting YouTube with some of his interviews about Covid-19 and his deal with Q-Biomed to develop Mefenamic Acid fell through. You can buy Ponstan very cheaply, outside of the US, even as a pediatric syrup.

Hopefully, Dr Naviaux's Suramin will be a game changer for some.  More of that in the coming post on leaky ATP.

Conclusion

I am told where we live that Monty’s autism is “fixed”, or by one autism Grandad we know, “he’s 80% fixed”.

If you started life with (really) severe autism, even 80% fixed means you are still pretty autistic, much more so than Elon and Greta, but far less so than the now adult “children” over at the National Council for Severe Autism, who have really severe autism and often had a very early plateau in development.

Monty has finished his year-end exams.  Overall, the grades of his NT classmates are pretty terrible, maybe due to Covid disruptions.  I told Monty’s assistant that if he can come somewhere in the middle, without her doing the tests for him or having extra time, that is a great result, regardless of the grade itself.  In all his subjects he comes in the middle. In the English educational system, Monty is now a C student, maybe even with the odd B or D; so not something to boast about.  What really is amazing  is this person could not figure out  9 – 2 = 7,  at the age of 9 years old, prior to starting bumetanide and his Polypill therapy.  Now he is nearly 18 years old.

If you find that your young child is a genuine bumetanide responder, but later struggle to source it, take a close look at what untreated severe autism looks like by adulthood.  Then you may choose to redouble your efforts to get hold of your game changer. Some readers are getting it from Egypt, Pakistan, Nigeria, China, Austria and many from Mexico and Spain.  In Brazil you can buy it only in a compounding pharmacy. The lucky ones get it at their local pharmacy, which is what should be possible for everyone and one day that might even happen.

There are countless fine-tuning therapies that may be potentially effective in a particular person.  They are certainly worth having; you just have to look at what is available and cost effective.

There will soon be a post about leaky ATP in Fragile X and autism.

Two readers have highlighted the research suggesting that Betaine might have a similar effect to Bumetanide.  It does not block the NKCC1 transporter, but it may reduce the mRNA that produces them, so the net effect may potentially be similar.  At much lower doses, Betaine is a common autism supplement.  This will be covered in the next post.