Showing posts with label Treating Autism. Show all posts
Showing posts with label Treating Autism. Show all posts

Wednesday 19 May 2021

Autism Videos - Personalized Medicine to treat Autism using off-label Generic Drugs


Today’s post contains three autism videos.  I was asked to give a presentation about treating autism with off-label drugs.  This turned out to be quite easy to write, but it kept getting longer and longer.  I think most people would need to watch it in two sittings and you do need to have a deep interest in the subject.  I could have gone on for hours longer, there is much more to tell.  

Click on the settings to watch in HD, then you can read the slides clearly.  In the lower right corner of YouTube, click on the white cog shape, select quality and then HD.


I also include two very good videos by Tony Attwood, which are much lighter going, but really explain why Asperger’s and Autism are better understood when considered separately, albeit that they really are part of the same spectrum.  They should be required viewing by anyone new to the subject of autism, parents in particular.



Personalized Medicine to treat Autism using off-label generic drugs


This video was presented at the conference: -


Autism - Challenges and Solutions 

Moscow 18 May 2021


by Peter Lloyd-Thomas




Here are the excellent videos from Tony Attwood:-



Could It Be Asperger’s?


 Could It Be Autism?




Tuesday 25 August 2020

Navigating "Medical" Approaches to Treating Autism

One doctor/autism parent recently mentioned to me that readers need to be made aware that drug interventions for autism can take time to show effect and that since parents see their child every day, they may not notice such gradual changes and potentially throw away a drug that actually is effective in their case.  This is indeed true.

On the other hand, as noted in their critique of Vitamin B6 use in autism, the Lurie Center for Autism at Massachusetts General for Children advised:

“It is difficult to track improvement or decline in children with autism because many have cycles of better, then worse, behavior, and many are also involved in more than one therapy that may change while the child is on supplements …
In our experience, although parents may see a change (positive or negative) in the short term, few continue to give megadose vitamin B6 to their children because of the difficulty in teasing out whether or not it really makes a difference and because of the activation and irritability seen in long term treatment.”

Some parents do not value small improvements, but if you combine five therapies, each with small improvements, the net effect can be substantial.

Some interventions have no side effects, unlike many B vitamins, and so it is just a question of whether there is a genuine benefit that is sustained.  If you stop the therapy, is the effect lost? albeit possibly gradually, and does the same benefit return when you restart the therapy?

As the child gets older, does the therapy continue to have value?  I recall being asked by Dr Ben Ari, how do I know after 8 years my son still benefits from Bumetanide? Every now and again we make a pause from Bumetanide and see how he responds.  How would you measure the response?  I use how good my son is at his online math tutoring program as an objective measure of cognitive status. I also ask him in the afternoon what he had for lunch that day; without bumetanide he usually cannot answer.

Another doctor who was treating his son with bumetanide and also low dose clonazepam for some years, told me that he ran out of clonazepam and decided to see if it still provided a benefit.  He concluded that clonazepam was no longer needed.  It is important to check; there is no point using a drug just for the sake of it.

Some people find a positive effect is lost and they need to readjust their dosage.  This seems quite common with sulforaphane.

As some readers have found, interactions between drugs and supplements mean that dosages may need to be adjusted. Low-dose clonazepam in particular has only a very narrow effective dosage range. Very many drugs, including verapamil, reduce the excretion rate of clonazepam and so increase the level in your blood. Vitamin E increases the metabolism of clonazepam.

An even more fundamental issue is whose interventions should you consider and where is line between potentially helpful therapies and crank therapies.

I am surprised how different clinicians react to other people’s therapies. For example, one US neurologist when introduced to the idea of potassium bromide as a therapy for autism and indeed pediatric epilepsy thought the idea was very interesting and lamented not being able to try it, while another US neurologist’s immediate reaction was “call child protective services”.  Both neurologists are well known autism doctors.

There are many widely shared approaches to treating autism, some are dietary like the gluten and casein free diet, the ketogenic diet or the popular GAPS diet; some use dietary supplements like fish oil and vitamins.  All approaches have their committed followers.

Most medical doctors are critical of any therapy claiming to treat autism; the few progressive mainstream doctors who do attempt to treat autism can be very disparaging about the methods used by others.  Of course, the most open-minded medical doctors are the ones successfully treating their own child's autism.

Some “protocols” that are put forward are presented as treating a very wide range of conditions (chronic pain, Alzheimer’s etc), far beyond just autism and this does naturally raise suspicions, but some conditions with very different symptoms can share similar underlying biology.

Mainstream medicine is by its very nature extremely conservative, cautious and slow moving.  Different countries may practice very different mainstream therapies and some techniques take 20 years to become adopted from one continent to another.  There is no single mainstream, it varies.

Progressive mainstream medicine gradually pushes the boundaries. In the world of autism such practitioners are mainly in the United States and surprisingly in Italy.

Science driven autism therapy stretches beyond progressive mainstream medicine. It takes many years for ideas in the scientific research to become part of medicine.  If you do not have a couple of decades to wait, you can choose to look at the science and identify what might eventually become medicine.

Applying an open mind to what might seem far-fetched alternative therapies can reveal alternative modes of action which are very much science based. Dr Yu has therapies for autism based on treating parasites.  It turns out that some anti-parasite drugs like Ivermectin and Suramin have modes of action that really should benefit some types of autism, but have nothing to do with parasites. 

If someone finds their Alpha Lipoic Acid (ALA) chelation therapy beneficial, this is not a surprise because ALA is an antioxidant widely used in medicine to treat diabetes and will benefit those with oxidative stress (autism, mitochondrial disease, cardiovascular disease etc).  It might have nothing to do with chelating metals from your brain. 

The DAN! (Defeat Autism Now) protocol was very popular and many people in the US still have a “DAN Doctor” who is applying the ideas of Sidney Baker, Jon Pangborn and others.  These are so-called biomedical therapies and mainly use dietary supplements rather than prescription drugs.  Defeat Autism Now!, closed down in 2011, was a project of the Autism Research Institute (ARI).

In North America there are doctors of functional medicine, integrative medicine, holistic medicine. There are naturopaths, homeopaths, doctors of Osteopathic Medicine (look for the DO after the name and not MD) and doctors of chiropractic medicine (DC after their name).

What is clear is that most autism parents prefer the idea of special diets, supplements and the simple protocols like that promoted by Nemechek, which are often claimed to work for everyone. 

I do not think many turn to Dr Chez and his book on medically managing autism; he does not claim to offer a simple answer and that is what parents want. 

I am amazed how popular Nemechek is and that people have even informally translated his book into different languages and then it gets shared virally.  It is like the new DAN! Protocol. I should note that his ideas do indeed work for some people.

You would think that having a doctor of medicine (MD) is best, but then nothing much about autism is taught at medical school.  Nemechek is a DO, not an MD.

I would have thought a clever neurologist like Dr Chez would be best, but I take note that many people have found an open-minded psychiatrist, who helps them trial off-label therapies, is best. This seems to be particularly true of adults with mild autism / Asperger’s.

There is no one-stop-shop for treating autism, no matter how big your budget is.  You have to navigate your own path, rather than just hoping for the best.  If you rule out off-label drugs, you are ruling out many potent therapies; it is rather like the "warrior" going into battle wearing a blindfold or having their hands tied behind their back.  The result likely could have been better.

Saturday 14 March 2020

Should you treat Severe Autism yourself? Consider what may happen if you do not

RMS Carpathia  picked up Titanic survivors from life boats, the others had drowned

I was recently asked by some friends of ours, how come Monty, now aged 16 with autism, has changed so much over the last ten years. It turns out they have a relative with a 12-year-old son, who has autism and does not speak.

A few weeks later I was asked to have a chat with the boy’s mother and tell her what I have been doing, regarding treating autism, for the last 13 years.  Following the standard practice where we live does not give good results.  The boy does not talk, was not taught sign language, or to use any augmentative communication device, he cannot write and cannot read.  He goes to mainstream school and has a 1:1 assistant, but what does he learn there?

When we started treating Monty after his diagnosis aged three, he was entirely non-verbal, cried a lot and was not interested in anything.  From the age of four he was sitting at a little table being instructed at home, as well as going to kindergarten four hours a day.   Only from the age of 11 did he become full time at school. 

A couple of weeks ago Monty was skiing on black slopes (the hardest ones) in Slovenia and Austria, with his elder brother. He had to read a very dull 220-page book during the school break. We are practicing quite hard maths at home, using an online teaching resource.  When getting fitted for ski boots, Monty’s mother explained to the guy in the ski rental store, “he’s autistic … but he can ski”.  Yes, he can ski, but it was not a simple road to get there. He started when he was 6 years old with a special needs instructor; when he was eight he fell on the ski slope and broke his collar bone - a perfect opportunity to give up for good, but we did not.  Now he skis all week without a fall. It did not just happen, ditto playing the piano, ditto tying shoelaces, learning to cross roads and everything else.

I explained to the mother of the 12 year old how much easier it became to teach Monty, after starting his Polypill therapy, but that you still need to use personalized education alongside personalized medicine.  If you use neither, the result is what it is.

Instruction at home does not have to cost anything, it just requires a vast amount of perseverance.  All the books you might need have existed for decades.  The advent of the internet and touch screens makes everything so much easier.

Even in rich countries like the US and UK, the outcomes in severe autism are usually pretty terrible and yet could be so much better.

Some parents seem to be waiting to be extracted from their “autism hell”, but nobody is coming to help them.

I recall visiting Romania after the fall of communism and being told how many people endured a pretty tough life in the 1980s.  Some people actually believed during Communism that “the Americans will come” and liberate them; they never came and Romanians liberated themselves in 1989. It took them 42 years and a little prompting from a man in Gdansk (Lech Wałęsa). 

Below is an excerpt from Thinking Autism’s current blog post.

What autism means for my son

My son is 20, has very high support needs, minimal speech, and his communication is limited to basic requests. His sensory processing difficulties are severe enough to have a significant impact upon his attention, focus and learning. He can’t hold a conversation, talk about past experiences, or tell me if he is in pain. He has little awareness of danger, and needs round-the-clock supervision.

Unless an effective medical treatment is found, he will never be able to keep himself safe or make any important decisions for himself, and will eventually require some form of closely supervised residential care for the rest of his life.
That is the stark reality of the impact of autism on my son.

Clearly, if my son’s disability were cured or corrected, then all the barriers to his full participation in society would be completely removed, and he would have no need for societal accommodations. If his disability were managed or diminished, he may well have greater independence and freedom; for example, improved communication skills might enable him to exercise a greater degree of choice and control over his life.

A drug called bumetanide has also been shown to ameliorate symptoms of ASD in a number of trials … The first bumetanide studies were carried out in 2010, but ten years later, translation into clinical practice still seems a long way off.

In the intervening decade, my son’s childhood and teenage years have passed by, and he has entered adulthood, with no prospect of accessing any of these potentially life changing treatments.

When the Titanic sank in the Atlantic Ocean, those without a place in the lifeboats waited 160 minutes for the ship to sink.  120 minutes after Titanic sank, the rescue ship, Carpathia, appeared.  Do you stand on the deck listening to the band playing as the ship sinks, or at least try and build yourself a raft?

My suggestion to those left on the deck of the Titanic, or parents enduring their “autism hell”, is to do something about it.  If your child learns nothing at school, then teach him at home.  If you want bumetanide, go and buy some.  If you want a doctor to help you, go and find one.

Why do some autism parents, particularly those dealing with severe autism, not help themselves? 

This recent study suggests something that we probably already knew. Some people call it denial, others depression.  I actually think it is best described as the "freeze" response, which does actually exist in psycho-babble speak. In the freeze response to a shock there is no fight, no flight, just nothing. 

According to new autism research, we can now call it post traumatic stress disorder (PTSD).   

Challenging child behaviours positively predict symptoms of post-traumatic stress disorder (PTSD) in parents of children with Autism Spectrum Disorder and Rare Diseases

·        18.6% of the sample of parents of children with ASD met criteria for a provisional diagnosis of PTSD.
·        Health professionals should screen parents for PTSD when potentially traumatic challenging behaviours are present in children with ASD.

In reality, if health professionals do not want to treat children with autism, they are unlikely to want to treat post-traumatic stress disorder (PTSD) in their parents. but it is a nice idea.

It does not help that autism organisations often give very poor advice (advice proven not to yield good results) and doctors are usually taught nothing about autism; only a very few can help you.

Mainstream schools should not accept children if they cannot teach them at least basic skills.  The most basic skill is some form of communication, be it sign language or some form of augmentative communication.

Special schools that do not at least try to teach some form of augmentative communication should not exist, but they do.

Tuesday 22 March 2016

GABA, bumetanide, ketogenic diet, channelopathies, histamine … and all other things autism

A Guest Post by UK Charity Treating Autism

If you are a reader of this blog and interested in all things autism, especially those things regularly discussed here, you may want to find yourself in London on the weekend of 18-19 June, attending a conference organised by a UK charity Treating Autism. The location is Brunel University campus - a stone’s throw from Heathrow airport, or a fun tube ride from Eurostar St Pancras station.

If you can only attend one day make sure it is Sunday 19th, as this day will feature presentations on most promising treatment approaches in autism including the one on bumetanide for autism titled ‘Reducing symptoms of autism by addressing dysfunctional GABA: A chloride concentration story’ by none other than Dr Lemonnier himself.

Prof Dr Athanasios Evangeliou of Papageorgiou Hospital Thessaloniki will be giving not one but two presentations: ‘Autism, epilepsy and metabolic disorders’ (am) and ‘Alternative” treatments for Autism in mainstream clinical settings’ (pm). He will be discussing many different things, amongst them the merits of screening evaluations and identification of metabolic biomarkers in autism with therapeutic relevance, such as for example biotin, B complex vitamins, branched chain amino acids and ketogenic diet. (To jog your memory a little see here and here.)

John Rodakis of NofOne Research Foundation will be flying over from the States to update us on the latest sulforaphane and suramin autism trials, Dr Coutinho from Oxford Uni will reveal their latest findings on maternal autoantibodies in autism, and there will be a very special presentation by a very special reader and a regular contributor to comment section of this blog – as I am not saying more J you will have to find out by clicking on this link

Hope to see you there!!

(A big Thanks to Peter for allowing me to share this!)