UA-45667900-1

Thursday 16 April 2020

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!"





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.






25 comments:

  1. My best friend has spent about 10 days in the hospital for covid. We will never know if she had it (though she could hardly breathe for days before being admitted and she had the telltale gastro problems) because they bungled her first test and so she only got one 7 days after being admitted and taking the therapy: HIV meds and chloroquine (though I don’t know ih hydro or not) and azithromycin. She felt better covid vise but the side effects were horrible. One day she got a whole body cramp which had to be treated with a relaxant injection, the subsequent 2 days she had horrible tremors, more like shaking, which was also a problem regarding things like taking blood pressure or temperature. They discontinued the HIV meds after the cramp and In the end she refused the chloroquine anymore because she felt a lot better and was protesting the fact that her test had been lost.
    We are doing okay with the lockdown. There has been a covid death 10 houses from us, but we do not know the people or anyone they know. Our assistant got a pass so she can come every day, and since we live in a village we will be able to take a walk in our street every day due to the new measures. I am in touch with people though for whom this is almost unbearable. Even in healthy people with no depression or harsh life problems at all, I can see both sadness and agoraphobia starting to develop. I’m not sure this lockdown is the best idea regarding overall health. I have been following the research Germany is doing in Gelting (though one has to know german to do so since the media reports on it are terribily coloured by whatever bias the journalist has) and it seems to me that come summer, we should all try to get a ‘weakened’ version of the virus - both chinese and german research shows correlation between amount of virus exposure and disease severity which is also documented through the disproportionate number of deaths among medical personnel. I have not heard of any reliable tests one could order, especially not Igg/Igm tests. A friends father is a retired lab immunologist and I have sent him every test I could find online for a review and he told me that he believes a reliable igg/igm test is at least 2-3 months away. I will buy one as soon as it becomes possible and if anyone knows of one, do let me know.

    ReplyDelete
  2. hi all, i am on lockdown in italy with my autistic daughter, she is not seeing her aba team and therapists, does not have social training and is regressing, if I resume aba therapy how can i minimize risk of her being infected by her therapist and viceversa? Offering tests to terapist and her family? How often? any idea?? carla marta

    ReplyDelete
    Replies
    1. If you have just one ABA therapist and that therapist is just working for you, the risk is minimal. If you have 5 different therapists who each visit 10 clients, the risk is much larger.

      In reality, healthy children are hardly affected by Covid-19. It is old people and unhealthy people who are at a big risk, plus a tiny percentage of middle aged people unaware they have some genetic or other predisposition to the virus.

      If you know the therapist well, you end up treating her/him as a family member.

      Delete
  3. In my part of the world, we are pretty free to move around as we wish. Kids aged 1-15 go to school or kindergarten/daycare. Universities are closed, and anyone who can works from home. Stores are open, but mostly empty. People keep a physical distance, but do seldom wear a mask.
    Only time will tell how this strategy compares with others.

    This time, I'm mostly concerned for myself as I belong to a risk group. Very few kids die from Covid-19, but if mine get it they will surely share a generous amount of the virus to me. Only a week before corona hit my country I caught a sinusitis (?) that travelled down my bronchus and caused me severe lung ache for 2 weeks. When at last I called my doctor to ask what to do she recommended that I'd triple my dose of corticosteroids. Too bad it won't help at all if I catch corona, I can only hope it doesn't make it worse.

    Ah, sorry for the whining, guys. At least the sun is shining and I can enjoy it outdoors. :-)

    /Ling

    ReplyDelete
    Replies
    1. Sweden is like a big experiment. Hopefully it works out well and is a model for how you do not need to shut down your economy to deal with a pandemic.

      It helps having a socially responsible population.

      The other experiment is Belarus, where they just ignore the virus. I doubt that will end well.

      Delete
    2. https://reason.com/2020/04/17/in-sweden-will-voluntary-self-isolation-work-better-than-state-enforced-lockdowns-in-the-long-run/

      It looks like things are working well in Sweden. Nevertheless, it is very frustrating from my point of few in terms of our (USA) response to coronavirus because the economic carnage from our myopic policies I believe will:

      (1) End autism research for a long-time due to austerity measures that will inevitably be enacted from massively declining tax revenues. Just about anybody in the sciences who is not in the military or else able to make something useful in the private sector with their work is going to be out of a job which means autism research in the USA will more or less be over permanently.

      (2) Accelerate the rise of social darwinism economic philosophies like you had throughout the world in the depression era, especially among the working class of countries like Germany and Japan (the decline of the silk trade bankrupted millions of Japanese to the point of many parents having to choose starvation or else selling their daughters into sex slavery). Before Jews were placed in concentration camps, those deemed "unfit" were rounded up and murdered because everyone was poor and handicapped people were seen as a drain on society.

      (3) Lead to a lot of suicide and "accidents" in families with severely mentally handicapped children which includes autism as many of not most of these families are already under financial stress and trying to survive with an autistic child while homeless and keeping them alive will be extraordinarily challenging. And of course the state will be too poor to effectively handle autistic children and adults the way they do now which is imperfect, but far better than the return of very abusive asylums which will come back as a cost-effective measure in dealing with these people, that is if euthanasia policies don't get them first.

      Delete
    3. Sweden is internationally odd, because at the moment it is following the lead of epidemiologists and health authorities rather than of politicians.

      I agree that the economical - and thus political - lansdscape ahead looks distressing. The most vulnerable will suffer the most, and that includes children. More domestic violence has already been reported in France, and in Poland the rights of women and children are threatened by politicians who use the lockdown to try to introduce laws that otherwise would lead to mass demonstrations.

      On the other hand, one could hope for more money to health care and medical research now. Cytokines and inflammation are areas where we could expect more insights. I stumbled over this article (or rather just Figure 2 of it) reading up on influenza mechanisms, and while I don't think it's relevant to the way corona works it does feature cytokines, ROS, epithelial cells and NLRP3:
      Redox Biology of Respiratory Viral Infections
      https://www.researchgate.net/publication/326637077_Redox_Biology_of_Respiratory_Viral_Infections

      /L

      Delete
  4. Hello Peter, I have strong reasons to suspect that my poor daughter has fibromyalgia. She is constantly asking for pressure on one of her upper arms, sides of ribs. Do you think the Epic Genetic test is good enough? We will have to find a fibromyalgia proficient practitioner now too.

    ReplyDelete
    Replies
    1. This test measures a panel of cytokines which are apparently disturbed in fibromyalgia. Cytokines are definitely disturbed in most autism, but with very many different variations. IL-6 is reduced in fibromyalgia, but elevated in much, but not all, autism.

      The old BCG vaccine for TB is being re-purposed to treat Fibromyalgia; interesting if it works. It increases the level of some of the cytokines that are reduced in Fibromyalgia, so it would be a clever therapy.

      Measuring cytokines is a good idea, so the Epic test can only help. It is of course not a genetic test.

      Delete
  5. I have a phone consult today with Lukas Lange from Probably Genetic, so I want to explore this avenue too. Honestly, wanted to explore it for a long time anyways, now its just for two reasons. But I want to do the fm-a test too, just to rule things out. I haven’t done a cytokine test for several years now. When we did, we had the classic il6/il8/il1beta elevations, and when we did gcmaf that disappeared and instead we had mcp1 and tgfbeta slightly slightly elevated. we also have Pandas. I am currently subscribing to the idea of shelling out 10.000+ on testing in a very short time frame, to try and get a snapshot of her immune system here now today. She’s come a long way but still a lot to go. Atec currently around 25-30. Biggest issues speech, scripting and socializing.

    ReplyDelete
  6. https://www.project-syndicate.org/commentary/swedish-coronavirus-no-lockdown-model-proves-lethal-by-hans-bergstrom-2020-04?fbclid=IwAR2hoHy9KR5ENO1jc-zXdqVlqJkgiHSiehEufITUgQR4a96J-AxaSwDH3d4

    ReplyDelete
    Replies
    1. The problem with the articles I have read criticizing Sweden's approach (including this one) is that they all seem to be dishonest in how they present their cited statistics. For example, they say Sweden has a higher death rate than the United but neglect to mention they are about average across the rest of Europe. They also neglect to mention the reporting standards for Covid-19 deaths are very variable around the world and that Sweden reports deaths more liberally as they classify any death as a Covid-19 death if someone dies of any cause within the last 30 days of testing positive. This inflates the numbers that may be skewed from asymptomatic cases where someone dies of a heart attack but has no Covid-19 symptoms but it is classified erroneously as a Covid-19 death. There are finally antibody population tests being done around the world and some are finding 20% or more of the population already has antibodies to the virus which reduces the death rate by 50-85 times the CFR in some places making the virus comparable to the flu or slightly more deadly.

      Sweden should be commended for having a standard and sticking with it while my country in the United States has people in New York state and elsewhere playing politics with the numbers now.

      The predictions from all of the politicians and their politically appointed health commissioners were that they needed to shut down the economy and institute de-facto martial law in the land of the free because hospitals would be overrun and millions not thousands were going to die and that even factored in social distancing. Well none of that happened so to save face in New York they are retroactively reclassifying other deaths that happened in the last couple months as Covid-19 deaths if someone was reported to of had cold or flulike symptoms without them ever being tested. In other words, they are allowing doctors to guess for people long dead now which means they can classify all deaths during that period if they want to as Covid-19 even if many of them died of accidents such as choking on their food and the resources to expose this fraud don't exist and never will as so many people are cremated these days.

      Sweden is not perfect, but at least they are honest and rational.

      Delete
  7. Hello Peter,

    Glad to see your blog again.

    I've just heard about suramine as a cure for autism. What do you think? Did you hear anything about that?

    Best Regards

    ReplyDelete
    Replies
    1. Un tio, there was a post all about Suramin a while back:

      Suramin, the Purinome and Autism
      https://epiphanyasd.blogspot.com/2017/05/suramin-purinome-and-autism.html

      Naviaux did get some financial backers to move his therapy forward, but he did not get agreement from Bayer the current producer, so he has to figure out how to produce his own product.

      Apparently, the effect does not last as long as hoped for, so you would have to inject Suramin every few weeks, rather months.

      Delete
    2. Ok thanks. And why don't you think we might try it? It's not nice to inject it every few weeks, but, what if it works?

      It would be great to have it as an oral pill.

      Delete
  8. There is a FB group called Support Naviaux research where you can get info. Link to a newsletter: https://lookaside.fbsbx.com/file/Naviaux%20Lab%20Newsletter%20Winter%202019.pdf?token=AWz15ka7UXfml8s1bgwqzv-XKPk5PWGpiOq6wy0u-pEX2-3HPc1g90iXy1jAuore35MPVHFtA9V865rXsdxnkfSIuiBc1gofHJZ4djpEIOERQ6rZRbDbe3SLObPTaVihZTyDA6bMT60tlGbQp-8rcaAaYccxXfGRWxnU31CNYkDgkw

    I have to confess that I have used a lot of time and effort to try and find Suramin for someone in the medical field who works with severely affected autistic children whose parents were willing to have a private trial so to say. I am confounded by the fact that I have not been able to get any, not even through my african connections.

    ReplyDelete
  9. Hello Peter,
    it’s the first time I post a comment but I have been following your blog for many years. So, first, let me thank you for all your research and ideas. They have been immensely helpful in the journey with my 19 year old kid with severe autism here in Brazil.
    I would like to ask you a question regarding Naviaux’s work: if his Cell Danger Response (CDR) hypothesis proves to be correct, would it be fair to suppose that our kids are at first more protected against virus infections, including Covid-19?
    My son is one of those never-get-sick boys but I am of course not implying that we should relax all the sanitary measures like social distancing. Just curious.
    Best wishes

    ReplyDelete
    Replies
    1. Hello Carlos, yes I think the people with over-active immune systems are likely to fight off Covid-19 before it can take hold. I do put my son in that category.

      It is interesting that the old BCG vaccine for tuberculosis is being repurposed to treat people with an "under-active immune system", such as that found in fibromyalgia. I would think females with fibromyalgia are at elevated risk from Covid-19.

      It is currently disputed as to whether the BCG protects against Covid-19. I think you have to have taken the BCG relatively recently for it to have much benefit.

      The BCG fibromyalgia trial is at Massachusetts General Hospital, so they are serious people.
      https://clinicaltrials.gov/ct2/show/NCT03582085

      Delete
    2. Thank you, Peter.
      Very interesting! At least the hyper imune state may be really helping us in some way, as I was supposing.
      Another quick question: since Bumetanide has some intracellular effect, do you think it could soften or have any influence on the CDR state?
      The so called “intracellular effect" that I am thinking of would be, for instance, the fact that Bumetanide lowers intracellular chloride. But I believe it’s not the case since from what I understood Bumetanide lowers chloride not by actually taking it out of the cell but by blocking its reabsorption.
      Anyway, it would be great to have your thoughts on this matter.

      Delete
    3. Carlos, I do not think bumetanide will affect Naviaux's CDR state.

      We should note that the cell danger response is his theory and not really endorsed by anyone outside his group. He may be right and hopefully he is.

      Delete
    4. I'd say Naviaux's theories connect with research on the integrated stress response and 'neuroinflammation'/NLRP3 inflammasome (possibly also with some link to the unfolded protein response).
      My simplified take on it is that normal immune hits for different reasons make the brain shut down, which involves several pathways (ion channels, metabolism, protein production..). This is highly relevant in autism with a regressive component, and probably other autism as well.

      Clemastine and oleamide might be something to try for modulation of purinergic receptors as suramin is not around.

      It's annoying that Naviaux seems so clever, but still is not able to explain things on a detailed, scientific level.

      /Ling


      Delete
    5. Thanks Peter and Ling for the answers and, yes, Naviaux's CDR is untill this moment just a very clever hypothesis and I also hope it proves to be true.

      Delete
  10. Carlos, I will probably not be able to explain this scientifically, and Peters opinion is definitely the more valuable. But from reading so much during these past 6 years, it is my understanding that the ‘never get sick’ children do get infected but their immune system doesn’t muster the response, and it is the response which is often what we see as ‘illness’. I have talked this through with many asd parents in regards to Covid and I think even Peter mentioned here someplace - I really don’t want to find out how my kid reacts to Covid because it could be awful in two ways - 1. being infected but not having immune response so we never know and God knows what it does inside. 2. being infected and the constantly lurking autoimmunity of ASD kicking in, leading to catastrophic illness. I wish to point out to everyone here that, in case of a really bad reaction, both Chinese and Israeli centers that employed MSC stem cells have reached 100% cells which is no surprise to anyone who knows what they do.
    I actually came here to ask Peter something: Do you think I can replace my daughters year-round ibuprofen with Sytrinol though in her case its for Pandas and not teeth?

    ReplyDelete
  11. Hello Peter

    I hope that you and all of your readers are keeping well during our new normal.

    I am a recent follower of your amazing blog and was curious to know if there are doctors out there that you knew of (I am based in the UK) who do supervision (albeit remotely now) or offer detailed instruction/advise for Bumetanide. My son was going to be in a trial which was cancelled because of the epidemic, but from reading the reports along with our initial correspondence with the doctor here, it seemed quite promising. Given that it is quite likely that this won't be continuing for quite some time (if at all) and being in the UK, we are exploring going on our own. We have done loads of biomedical, but there hasn't really been anything that stood out. Also, with biomeds it seems like every practioner throws everything at our son and we never know what is useful and what isn't.

    Our son has more or less classic autism and is 5 now. He has massive issues with short term memory, so his speech is confined to one or two words. If we can get some improvement from one thing that seems obvious, we would be on our way to our own poly pill.

    Many thanks

    Keith

    ReplyDelete
    Replies
    1. Keith, I do not think any UK doctors are prescribing bumetanide for autism yet, because they feel they are not allowed to. The UK is quite restrictive and does not like off-label prescribing.

      The post below is by a doctor (Agnieszka) telling you how to use bumetanide safely. You could ask her for a tele-consultation.

      https://epiphanyasd.blogspot.com/2019/06/the-safe-use-of-bumetanide-in-children.html

      Delete

Post a comment