Life with Autism under Lockdown

I thought there should be at least one post about how life has changed during Covid-19.  Where we live, Monty’s life goes on pretty much as before, now we are back to home schooling - but that is nothing new for us.

School starts at 9am, there are 3 or 4 classes a day online from school and then activities and exercises till 3.30pm. 

We have PE, art and music like at school.  Piano practice continues most days.

Monty’s latest addition to his routine is reading 30 pages a day of a novel in the evening.  Now that he has started, he insists on doing it every day.  Having finished the (boring) books from school, he is going to start reading his brother’s collection of Biggles novels. They are about a fictional fighter pilot, the series starts in 1916 and continues for 50 years (the author got old, but Biggles did not).  We are going to set the scene with one of the old epic films about fighter aces from 1914-18.

The parks are closed and we have a curfew starting at 5pm weekdays and now across the entire weekend.  If you live in a small apartment, as many people do in the areas with the most strict lockdowns, life clearly will be difficult for people who do not understand why their movements have suddenly been restricted.

In many countries parents have asked for special treatment for those with autism, so that they can go outside more often. This has just been implemented where we live.

Parents are now going outside to walk their child with autism during the curfew and then neighbours are calling the police to report them.  In some countries you can get a special paper confirming your right as a disabled person to be taken outside, when everyone else has to stay at home.

In our case, Monty accepts that schools, parks, restaurant and cafes are all closed, but he expects that come September life will return to normal and his brother will go back to University.  Monty is lucky to live in a house with a garden, so he has plenty of space and lots of things to do.

Life with autism under control is not so demanding, even under lockdown.

When Monty was eight years old, we had nine months of autism out of control, which then results in a self-imposed lockdown.  That period ended just before Monty started his Polypill therapy in 2012.

I would not want to be in lockdown with an adult-sized person with untreated severe autism.

The Big Issue

Recently I was asked for some advice by Monty’s assistant; her friend works publishing a magazine homeless/disadvantaged people sell on the street.  One of their best “sellers” is a young man with mild autism.  He actually lives with his parents – he is not homeless.  He is struggling under the lockdown, because the magazine is not being published; he still turns up at the office to collect his copies to sell, even though there are none.

The young man became very anxious and so his parents gave him something to calm his nerves (which turned out to be Valium).

I was told that he had been given some pills, but in spite of these pills he got worse and started being aggressive, which is totally out of character.  This was all (falsely) attributed to the Corona virus changes to life.

As usual you do have to double check the facts.  Where we live a man with “mild autism” does not mean a person with Asperger’s, it means a person with Autistic Disorder (i.e. severe autism), but not such a bad case, so the young man can walk to work by himself and has some speech. 

I was asked what pills the parents could ask for, to calm him down. I explained that for anxiety people with autism often get prescribed benzodiazepines, but for aggression and self-injury they might get antipsychotics.  Neither are a good choice in most cases.

“And … there should not be any side effects.

The pills he currently takes are just something very mild”

So, what pills had he been given? It was a local brand name I did not know, so I looked it up and it was Valium/Diazepam, the benzodiazepine.

Adult with autism going crazy after Valium? that sounds familiar.

You don’t want Valium, you want 2mg of Bumetanide.

People who show a negative reaction to benzodiazepine drugs, usually prescribed to calm you down, are very likely to be bumetanide responders.

Benzodiazepine drugs increase the effect of the neurotransmitter GABA. In most people GABA is inhibitory, so increasing its effect will calm you down and ultimately sedate you.

In people with GABA working in reverse, it acts as excitatory.  This will reduce cognitive function and affect mood and behavior.  If you “turn up the volume” of GABA by taking a Benzodiazepine drug like Valium, you will make such people go crazy, with aggression and self-injury.

Hopefully the parents of the young man will get my message and stop giving Valium.  It would be nice to think they will also start to give Bumetanide, but that is their choice and I assume they most likely will not.  A diuretic for autism? How crazy is that.

How crazy is an anti-malarial for Covid-19?

How are the French doing with an antimalarial and an antibiotic for Covid-19, that I referred to in an earlier post? Say farewell to Covid-19 in just five days, it appeared.

By now the French have treated thousands of people with their new off-label therapy.  Also being developed in Marseille is Bumetanide as an off-label autism therapy by Neurochlore.  It looks like free thinking is flourishing on the Cote d'Azur.   

The data below is from the Marseille University Hospital Institute for Infectious Diseases (IHU Méditerranée Infection) and the wider hospital group in Marseille called APHM, which means Assistance Publique-Hôpitaux de Marseille.

The public hospitals in Marseille have treated 4,337 Covid-19 patients and 78 died (1.8%).

Within that group 2,671 were treated at the specialist IHU hospital with the antimalarial hydroxychloroquine (and some with azithromycin in addition) and of those that received at least 3 days of treatment 11 died (0.4%).

I think we can infer that 1,666 patients did not have hydroxychloroquine and 67 died (4%).

So if taken sick with Covid-19 in Marseille, tell the ambulance:

         "IHU Méditerranée Infection et vite !!"

If needed you can add:

        "Appuyez sur le champignon!"

Source :  https://www.mediterranee-infection.com/covid-19/

As I suggested in my post on Covid-19, hydroxychloroquine looks a very good bet.  The supposedly fact-based media (CNN, BBC etc) continues to say there is no hard evidence to support the use of hydroxychloroquine.  How much evidence do you need?

To measure the success of hydroxychloroquine, you just count the bodies.

If this is such a struggle, what hope is there to ever prove a drug can work for such an ill-defined condition as autism?

Until you have been vaccinated against Covid-19, it appears that what you need is hydroxychloroquine + azithromycin and some potassium, to treat the hypokalemia caused by Covid-19. Ideally you would also have a home test for Covid-19, which are getting much cheaper, so you do not take the drugs unnecessarily.

Fortunately where we live hospitals are routinely giving hydroxychloroquine + azithromycin, but ideally you would start the antiviral therapy before getting ill enough to go to hospital.

Tom Hank’s wife was complaining recently in the media about the side effects (nausea, vertigo etc) of the chloroquine she was given in hospital in Australia for Covid-19.  I think that is a little ungrateful. Untreated Covid-19 can have a pretty terminal side effect.

Covid-19 – Friends, Survival of the Fittest, Focus on Reality and Forget about PC

Replacing the EU Flag with the Chinese Flag in Italy

In times of crisis people often find out who their friends really are.  In Northern Italy teams of doctors and equipment arrived from China, Russia and Cuba.  The citizens of a town in Italy have taken down the blue EU flag and replaced it with a red Chinese one.

Some Americans on social media think it is a "photoshop job".  Where we live Chinese doctors have also arrived, along with donated ventilators and other equipment.  The Chinese flag is fluttering on many video/digital billboards.

We should note that Italy sent aid to China, when Covid-19 first appeared. 

  

In most countries treatment guidelines have been published to determine how to treat patients and how to ration the limited available medical resources.  There is nothing new in rationing medical resources, it happens every day.

In terms of therapy, the note linked to below (in English), is very good.  It includes both chloroquine and hydroxychloroquine, mentioned in my initial post.  Note the dosage is tapered, as I suggested in my post.  In the case of hydroxychloroquine, you only need 12 tablets; so a standard pack can treat 5 adults.  Time for emergency production to start? Or we have to wait for the Chinese to do that for us?

INTERIM CLINICAL GUIDANCE FOR PATIENTS SUSPECTED OF/CONFIRMED WITH COVID-19 IN BELGIUM

Note that these drugs may have side effects, in particular QT prolongation of your heart beat.  This is a possible side effect of many drugs,  You would not want to combine multiple drugs that prolong QT. The QT interval is measured by ECG.

I am pretty sure I took chloroquine many years ago when travelling in a malaria infected area and never had an ECG.  It is clearly a case of balancing risks.  



Back to triage 

In the Napoleonic wars the French came up with the word triage and by the time of the World War One they had fine-tuned it. Those collecting the injured had to categorize patients into one of three groups:-

·         Those who are likely to live, regardless of what care they receive

·         Those who are unlikely to live, regardless of what care they receive

·         Those for whom immediate care might make a positive difference in outcome

In the current Covid-19 outbreak patients are first split into two groups: -

·        At-risk group, based on age and existing medical conditions 

·        Not in an at-risk group, based on age and existing medical conditions

Severity of the Disease

·        Mild to moderate, the case for most people (no pneumonia or oxygen required)

·        Severe, breathing difficulties requiring oxygen

·        Critical, ARDS (Acute Respiratory Distress Syndrome), Sepsis, Multi organ failure.  The people with critical severity require mechanical ventilation and intensive care

Frailty assessment

The clinical frailty scale (CFS) is used to give a rating from 1 (very fit) to 9 (terminally ill).  Each patient is given a CFS score when it is necessary to ration care.

People with a disability obviously do not want to get a black mark in the frailty assessment.

When overwhelmed with sick people, those working in hospital are not going to be able to devote time to people who are disruptive (aggression, self-injury etc) or those who need a family member at their bedside.

Another issue is where to put disabled people after treatment, so they do not block hospital beds needed for others.  In Italy hotels have been taken over to house people who are still infectious, but not seriously ill.

People who have intellectual disability (ID/MR) are not so easy to house, as this recent article highlights.

Developmentally Disabled New Yorkers Stuck in Hospital After COVID-19 Recovery

According to AABR ( Association for Advancement of Blind and Retarded), a non-profit with a New York State contract to house roughly 200 adults with developmental disabilities, their staff does not have enough necessary masks and gowns to safely retrieve 12 autistic and developmentally disabled residents who are ready for discharge after being treated for coronavirus.

Nine of those patients tested positive and six more hospitalized are awaiting test results. The 12 patients no longer require hospitalization, but are still considered contagious.  

“We have twelve individuals who have been hospitalized who are ready for discharge and isolation at home, but we don’t have a safe plan to bring them home,” said Libby Traynor, executive director of AABR, which used to be known as the Association for Advancement of Blind and Retarded, an 80-year-old organization that runs 22 group homes in the five boroughs.  Residents in six of those group homes have tested positive for COVID-19. 

Because of their intellectual disabilities, many of the AABR clients are unable to speak, let alone comprehend and follow safe social distancing and isolation rules, and the virus appears to be spreading rapidly within their facilities.

"It’s a pretty big ask to ask folks to take care of individuals, and they don’t have the protective equipment that they need,” Traynor said.

Survival of the Fittest

People affected by disabling conditions are worried that they might suffer from the rationing of hospital resources.  In times of crisis political correctness goes out of the window and it is back to survival of the fittest.  Younger healthier people get priority because they have more potential future years ahead of them and they recover faster and make space for the next patient.

  

Complaining that it is not fair is not going to help you.  Assigning ventilators by lottery, as some suggested, is just deluded. Fortunately, rationing life-saving treatment is nothing new and systems are in place to maximize the public good.

People with Disabilities Say Rationing Care Policies Violate Civil Rights

He, too, asked the Department of Health and Human Services to take action to stop rationing.

The letter, dated March 18, asked the department to "quickly issue a notice to physicians and hospitals specifying the applicability of non-discrimination requirements" of federal disability civil rights law.

Romano says he got a response from Roger Severino, who heads the HHS Office for Civil Rights and that he's now been talking to officials there about taking action.

"We're working very, very closely and very hard to make sure that we get some form of guidance out to the medical community as soon as possible," Romano says.

It's still unclear. If the federal government will respond. And if so: How forcefully.

If you are at high risk, self-isolate.  It is up to you if you want to self-treat, but it is wise to know what you are doing.

Covid-19 coronavirus: US man dies after taking fish tank cleaning product

An Arizona man has died and his wife is in critical condition after they ingested chloroquine phosphate - an aquarium cleaning product similar to drugs that have been named by US President Donald Trump as a potential treatment for coronavirus infection.

The couple, in their 60s, experienced immediate distress after swallowing the drug, an additive used at aquariums to clean fish tanks, according to Banner Health Hospital in Phoenix.

Chloroquine phosphate shares the same active ingredient as malaria drugs that Trump has touted as possibly effective against Covid-19, the potentially life-threatening disease caused by the coronavirus.

According to the CDC’s at-risk list, people with Classic/ Kanner’s/ Severe autism are at elevated risk from Covid-19.  I have my doubts that young people in this group are at any elevated risk, if they are in good general heath.  Admitting a child with this level of autism to hospital for several days, alone, might cause problems (for the child and the hospital).

Missed Chemotherapy

Many medical procedures have been cancelled.

People are complaining that the delay disembarking from their cruise ship is affecting their chemotherapy. 

They might want to skip the article below from an oncologist.

Which cancer patients should be continuing chemotherapy during the coronavirus?

In the above article the oncologist is brutally frank about the benefit of chemotherapy in most cases.

In effect, she is saying not to worry if you have to stop your chemotherapy.  The positive results in trials do not reflect the real world, where people have comorbidities etc. She says that “Patients are often astonished to hear that common therapies offer less than 5% benefit. The more lines of chemotherapy, the less the chance of success. Hand in hand with benefit goes harm.”

You do wonder why the bar is set so low for not very effective cancer therapy and yet so high for autism therapy. One pill is supposed to works for hundreds of different autism variants. All avenues are pursued to treat a person with cancer, but no avenues are pursued for someone with autism and intellectual disability. 

The same is actually true with dementia drugs, which are pretty much a placebo for the family members, rather than an effective therapy.

Conclusion

The currently recommended Chinese solution is mass testing to identify all those carrying the virus, most of whom have minor symptoms or no symptoms and then isolate them, so they cannot infect their family members and others.

My solution would be mass treatment of healthy people (no people with abnormal ECGs) with prophylactic doses of Chloroquine, to stop the virus spreading.  The drug is very cheap and it is much easier to make more of this drug than millions of ventilators. Once you take the drug the effect will last for weeks (the half-life is one month), so you could treat whole cities, one by one.  Many old people with arthritis take chloroquine or hydroxychloroquine every day, so I think the QT risk can be managed. 

Chinese doctors found that treating health workers with prophylactic doses of Chloroquine gave them protection from catching the virus from their patients.  15% of those with confirmed Covid-19 in Spain are health workers, so a little advice from China might be in order.   A trial in the UK is planned.

Chloroquine Prevention of Coronavirus Disease (COVID-19) in the Healthcare Setting (COPCOV)

Once hospitals get over-loaded, as they now are in Italy and parts of Spain, there are inevitably people who do not get fully treated.

If you are in the CDC’s at-risk group, it would seem smart to start treatment at home, when the symptoms start, and hopefully avoid the need for triage and “frailty” assessment a few days later.

Anti-viral therapy is most effective when taken early on and in later stages, not surprisingly, has little benefit.

Fish tank cleaner will kill you rather than the virus, but the pharmaceuticals proposed in the medical guidance note from Belgium are saving lives.

INTERIM CLINICAL GUIDANCE FOR PATIENTS SUSPECTED OF/CONFIRMED WITH COVID-19 IN BELGIUM