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Thursday, 23 May 2019

Take Away Points from Thinking Autism 2019 Conference in London


This is not a summary of the recent conference I attended in London, it is just the impressions I left with, which will be very different to those of the delegates and the other speakers.

Hopefully I do not upset too many people.

Here is information on the conference and PDF versions of the two presentations I gave.






https://drive.google.com/file/d/1ZaK0C6wiTz8SrqFVwNbe6B8bGpSbYpNv/view?usp=sharing ht






This is the only autism event I have ever attended, other than a discussion over lunch at a university reunion where someone organised a meeting for those from our year with an interest in autism. Other than that, I have really only ever met a handful of autism parents face to face.

I did meet our reader Petra in Thessaloniki a few years ago.  As expected, Petra is a very nice person in reality and not just in the comments on this blog

This weekend I met face to face with Agnieszka, Natasa who comments frequently and helps run the Think Autism charity in the UK, as well as many others who comment less frequently. I met my first MAPS-type doctor, Richard Frye and had a chat over lunch. It was a bit one-sided because I know a lot about him and his research and he knows nothing about me and my online collection of research.

I did meet some of the UK doctors who have a child with autism and an interest in doing something about it.  I genuinely wish them all the best in reforming the system.

Yes, I do actually exist

One teacher from North London said that she had been wondering if I really exist. Now she knows I do.

Why does everyone seem to know you?

There is a magazine for autism parents in the UK and the lady who runs it came up to me to give me her card and asked why she had never heard of me, but so many others had.  The world has changed and blogs have advantages over print media - people like the comments and the hyperlinks.

Yes, an Alternative Reality for Autism

I was told a few years ago that I appear to live in a different world to most other people, at least when it comes to autism.  I suppose that is true and I do only very rarely encounter that other world.  This conference was one of those rare events.

In my world anything is possible, until proven otherwise. I prefer to keep it that way.

Many people do have a choice and over the decades you will get to see the consequences of those choices; for better or worse.

Since not all parents are science wizards, there should be some support from both public health and educational services to ensure every child has a basic level of provision.  That basic level is not very high anywhere in the world.

If you want more you have to go and find it.

How much effort do you really want to make? What short term discomfort are you willing to take to ensure a brighter future?

I am surprised how much variation there is.  Some parents will do just about anything, while some others do nothing.

Personally, I am a proactive person. When something is broken, I try to fix it. If the “expert” gives me lame excuses, I do not accept them; I look for different solutions and maybe a different “expert”. 

Clearly, I am far from typical.  Thank god.

I do not lie in bed at night wondering what will happen to my son when I am dead.  I do not get depressed about the curtailed life expectancy in severe autism; rather I think it is up to me to make a difference while I am still very much alive.  The future is very much determined by past actions.

Other people are very welcome to visit this alternative reality where an open-minded science-based approach is encouraged.  An open mind is actually more important than a clever mind.

I did mention to Dr Frye about Potassium Bromide (KBr) for autism/epilepsy and his first reaction was “child protective services!”, someone else once mentioned “that is for pets!”.  Actually, Potassium Bromide (KBr) was the original human drug for epilepsy and to this day is successfully used in Germany for treatment resistant pediatric epilepsy. It saves lives.  Untreated epilepsy will kill you. About 30% of epilepsy does not respond well enough to mainstream therapies. Numerous modern studies regarding KBr have been published.  You just have to keep an open mind.  The Germans, Japanese, Chinese may know something Americans do not.

I did get indirect feedback that an autism parent showed the German/Austrian KBr research to a leading US neurologist, I think it was Dr Chez, and his comment was that he wished he could prescribe it to patients. For the moment in the US it is dogs with epilepsy rather than children with Dravet’s Syndrome and others that benefit.

Italy has some nice doctors

I have noted before on my blog that within Europe, Italy seems very different. We had a presentation from a Gastroenterologist from Turin who has been studying the bowels of kids with autism for 15 years and regarded it as a perfectly normal thing to do. No UK Gastroenterologist would do this. We had a chat about Milan, which I am now becoming more familiar with due to my elder son studying there. The top Italian researcher Dr Fasano, whose research I have covered in this blog, has moved to the US.  (one less clever doctor in Italy).

Israel has some nice doctors

We took Monty to Israel earlier this year, but it was to see the historical sites rather than to see the doctors.  There were a couple of speakers from Israel talking about cannabis in autism. They were really interesting and “well-adjusted”, they know their area of research is a bit controversial, but they find a way forward. I did cover in a recent post that you can use PEA instead of cannabis and they are aware of this, but cannabis is their research drug. They say that PEA has fewer side effects.

In their medical practise they actively treat autism, which no medical doctor does in the UK.  

Poland has some nice doctors

We already knew that Agnieszka is busy helping people in Gdansk and much further afield.  She is busy helping the UK charity Thinking Autism.   A husband and wife research team came from Lublin to talk about the ketogenic diet with a very thorough science-based presentation. They suggest a PET scan might identify responders. I think this is actually just one very specific sub-type, because it relates “simply” to altered glucose uptake to the brain being the underlying biological problem.

America has the most Autism Doctors, by far, at least one of whom is also a nice guy

There are so many horror stories of American DAN-type doctors charging huge fees for consultations and testing, you might imagine them all to be evil. I have never consulted a DAN/MAPS doctor, but Dr Frye definitely is a good guy and very willing to share his knowledge with others.

I did actually put him on my Dean’s list a while back, with some encouragement from our reader Roger.

The United Kingdom has no “Autism Doctors”

Many of the parents I met were English and very many of them had all been seeing the same doctor, who was then banned from seeing patients with autism. In the United Kingdom autism is untreatable.

If you want treatment, call it something else like auto-immune encephalopathy.

I am so glad I do not live in the UK

Many parents in the UK really struggle to achieve anything meaningful in regard to treating autism. I am glad to live in a different reality where the main limiting factor is the science itself, not the absurd things the UK parents have to deal with.

Bumetanide Clinical Trial Success

We had the absurd situation recently when it seemed that in the second largest country in the EU, almost no hospitals wanted to participate in the Bumetanide Phase 3 European trial for autism.

Fortunately, one of the parents at the conference is a Psychiatrist working in London. He has an interest in autism, because his child has it and he is already involved in the Balvotam trial for autism. Hopefully his hospital will become another centre for the trial starting this summer, that would be a big success.

Come on Agnieszka, see more Patients

Lots of people ask me for my email address and you may have noticed I always encourage them to contact me in public on this blog. I do this for several reasons including.

I am not a doctor and I am not giving medical advice. The comments are just a public discussion tagged on to a blog written by a parent whose albeit lengthy scientific education was not in biology.

Some comments and the ensuing discussion are really interesting for other people and it would be a shame for it to be hidden away.

I do think people in Europe should be able to access safe, evidence-based, off-label therapies, of the kind that Dr Frye is openly prescribing at the Phoenix Children’s Hospital. This is not really permitted in the United Kingdom, although there is a tiny bit of “wriggle room” if you have money, perseverance and some knowledge yourself.

I did ask Agnieszka if she is going to get into the same kind of trouble in Poland that any doctor would in the UK, if she openly held an autism clinic. Apparently not. Is her husband going to like it? I suppose we will find out.

How many people would actually come to Poland for a one-stop diagnostic work-up, where you could choose from a menu of MRI, whole exome screening, sleep EEG, 24 hour EEG, full blood work up testing all the things Dr Frye would test in Phoenix, once you could actually get an appointment to see him. As our reader Roger has told us, it is not so easy to get an appointment to see Dr Frye.  I suggested having Dr Frye also review the data and that if it was clear that there were GI problems there could be a referral to our new friend in Turin who has been treating the guts of kids with ASD for 15 years. You could then proceed to actually trial the off-label drugs that were indicated. 

None of this is cheap, but it is much cheaper than doing the diagnostics in the US, or the UK if you could actually access it.

Then I was thinking why leave it at evidence-based therapies for autism. Why not treat other poorly managed neurological diseases like Multiple Sclerosis (MS), there are so many things that can be done and actually much cheaper than in the US.

Then I came down to earth and realized that actually very few parents, at least ones from the UK, would take out their wallet and pay for all these tests, even though it would be a fraction of the cost that they would pay in US.

In the United Kingdom people expect their healthcare to be free from cradle to the grave. If it is free, although you do pay via your taxes, you are not the customer. The patient is the consumer, but he/she has little say in the therapy. If you need eye glasses, you might spend a day trying on frames in different shops to see what suits you, but if you need an operation you will have little say in the type of operation, you will get what the guidelines says is the cost effective therapy. If you have prostate cancer, you will not get proton beam therapy, that was developed years ago to minimize the side effects by focusing the radiation onto only the affected tissue rather than zapping all the surrounding tissue and giving you possible severe side effects.    

Who would invest a few thousand pounds/dollars to diagnose their child’s autism as accurately as possible? And then start treatment.

It would be nice to think there would be a long line. I think there would initially be a line for prescriptions for bumetanide. The real idea though is to make a thorough investigation to rule out treatable ID, single gene autisms, metabolic dysfunctions etc, not to be a prescription signing service.

So, as I said to Agnieszka, don’t plan to give up your day job any time soon.  Have treating autism as a side-line, make a list of therapies that you think are evidence based. It would not include things like the Nemechek protocol, I think it would include things like Bumetanide, Dr Frye’s Leucovorin, Propranolol and the many existing drugs already tested in clinical trials.  For Nemechek you can buy his book, no doctor is needed.

Where are all the younger parents?

Given that I have one son already moved out of the country to go to University, I was expecting to be feeling old surrounded by all those young parents working out what to do with their very young children recently diagnosed with autism.  There were some parents in their 30s, but most were much older.

It was nice that at least one Grandpa was there, looking for ideas for his adult Grandson. I did actually make a point of pointing him towards the science relating to his issues.

The Microbiome comes from the Mother

This may be obvious, should not be forgotten and sounds quite catchy.

It does not matter so much what is in Dad’s microbiome. It does matter what is in his epigenome and of course his regular genes matter.

Mum/Mom provides here half of the child’s regular DNA, her epigenome, all of the mitochondrial DNA and all of the microbiome that filters through to the child during pregnancy and during delivery (assuming there was no C-section).


Conclusion  

Having spent a couple of days mainly with British parents dealing with autism, I came home and told everyone how glad I am that I do not live there.  It would drive me crazy!

They can wait for years to get a diagnosis

No doctor is supposed to treat autism, even comorbidities may go untreated, because that might imply you are treating autism.   But many people still think they have a world class healthcare system (in some areas this really is true).

US style free early intervention for very young children does not exist. 

They have a very backward-looking Autism Charity (NAS) that is dominant and supposedly represents them.

Provision of special schools is highly variable and often parents take legal action to get better provision.  This means the less able parents that do not know how to play the system have even less resources allocated to their kids. 

They have about 2,000 young people with autism locked up for years in small, poorly supervised, private mental institutions. Just today another horror story has been released about the abuse that can occur.



The end result is some pretty browbeaten parents.

I was once asked if I would speak in the US and I asked what they would like me to speak about, it was very much TREAT AUTISM NOW !!!  Those are my kind of people.  More dynamic, pushier and demanding more – it is the only way to be.

The Israeli clinicians at the conference told us the only way they managed to move therapies, including cannabis, forward and actually treat autism was pressure on the government from parents. I guess Israelis know how to push. Now UK parents fly to Tel Aviv to treat their child with autism, some others fly to California and I met one nice lady who takes her daughter to Italy.





56 comments:

  1. Hi Peter, it was nice to meet you in person.

    I agree with most of what you've written. It's virtually impossible to get anywhere with Autism treatment on the NHS, however there are professionals who 'treat' Autism albeit privately. They include Nutritional Therapists and doctors specialising in Functional Medicine. There is also a society - The British Society for Ecological Medicine who are very willing to treat anything (with success) although they risk the 'wrath' of the GMC. I haven't found anyone who prescribes Bumetanide but some do prescribe folinic acid, LDN, and most do genetic/metabolic/microbiome/etc testing.

    This is something that I am very interested in pursuing.

    Best wishes
    Mashhood

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    1. pickle's mammy24 May 2019 at 15:10

      Thank you for that comment - I just googled "The British Society for Ecological Medicine" and have found an allergy clinic that I could potentially use near to Scotland! I think I would be far more comfortable there than with the Functional Nutritionist approach (I think). What is your experience of using docs you have found through the BSEM? Love that you have pointed me in this direction!!!

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    2. Hi Pickle's mammy. I haven't seen anyone in the BSEM. I am a member of the BSEM and have been to some of their events. I think they are a very forward looking society and quite brave too. Dr Myhill (one of their longstanding members) has been investigated over 30 times by the GMC due to prejudice/bias inherent in the medical community.

      Delete
  2. I hasten to add there are other professionals as well who look after ASD kids, including Naturopaths, Homeopaths, Craniosacral Osteopaths, etc. I have come across all the above.

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  3. This is very depressing read for all of us living in the Uk. I am one of them and my daughter is going to be 28 in August. I have given up on treating her autism but badly need a doctor how is going to look beyond her autism and consider the symptoms that she is experiencing. She is suffering, we are all suffering and nobody is giving a flying fuck about any of this. I have seen our GP endless times and all he does is to prescribe her strong painkillers! Last week he finally had promised to give us a referral for my daughter to see an endocrinologist. A week later there is still no referral...I don’t understand why! We have Bupa health insurance for my daughter but we need our GP to send her to see a specialist...and this is a huge struggle. He doesn’t care that she is hitting her head so hard when she is in pain, that she has a bold patch forming on her head. She looks like a balloon...swollen from head to toe ...her belly is like 9 months pregnant women...she hasn’t had a normal solid poo in years...she is moody and sweaty...there are so many symptoms that are obviously a problem... She eats quite healthy and small portions. I need someone like doctor “House” to see her and diagnose her correctly...and start a treatment. I don’t mind her autism but I want her to be healthy and to stop the pain. It is never ending cycle of anxiety, pain and fear that results in self harm, screams and ocd. I want to scream louder then her....I want someone to hear...to understand ...to give a shit!

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    1. Antonia, I am sorry to hear about your daughter's problems.

      While Dr House remains unavailable, you can contact Dr Agnieszka Wroczyńska, who has told me she is indeed happy for you to contact her. Here is the email address:-

      gdanskautismclinic@gmail.com

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    2. Antonia, I take it you have tried the usual prebiotic / probiotic / diet changes approach? There are people in the UK who do faecal transplant which seems to be successful quite often, see e.g. http://high-fat-nutrition.blogspot.com/2016/07/a-load-of-crap-in-gartnavel.html
      Aspie2

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  4. Hi Peter, I was at the conference and found your presentation amazing, finally someone was talking like I do (be it with more valuable information) but still unapologeticly about being a parent treating ASD in a way most see as taboo or even cruel in the country, I was of course devastated to realise you actually live in the US. We live in London with our two daughters, my youngest is 3.5 years old and was none verbal with zero eye contact until we realised she was Autistic at 2 and took action, we cried for 2 weeks and then read the GAPS book by Natasha Campbell mcbribe, we then saw a Naturopath and did a series of test, as soon as we had sent off the tests and before we got the results we went gluten and dairy free, 5 days later she turned, looked directly into her fathers eyes and said Daddy, it was like watching Jesus turn water into wine it was that much of a 360! This increased eye contact and speech just kept getting better and better with time and with more interventions, her test results in short showed she has extremely low elastase, extremely high glutamate, serious yeast issues, inflamed gut, mitochondrial issues etc. As we've changed her diet and supplemented to support these individual issues we've seen huge improvements, she still stimms loads but her vocabulary and eye contact in just over a year has gone from zero to nearly standard age appropriate, only today she said to me "mummy I like your dress, it has pretty flowers, do you like my dress mummy?" All in context and spontaneously, I didn't know if I would ever get to speak to her like that never mind at 3.5 years old. Dont get me wrong Beau also has private ABA therapy, speech and language therapy which helps a lot, along with all those other useless things provided by the NHS. The way I always describe it to people is that the scientific interventions we've taken lifted the fog and the ABA therapy is the tool to teach, but without the diet and supplements none of it would make even a dent. What's heart breaking is knowing that is if we were rich we could do so much more, we've already remortgaged our house to pay for all this stuff but aren't worried as we can already see the benefits of early intervention while the brain is still forming, so it's worth it, me and my husband will make things happen where we can financially. Its so frustrating in this country and I feel like I'm the only person willing to say it loud and proud rather than a whisper, your isolated as a parent of an ASD child as it is but then the ASD community shun you if you try anything outside of the NHS, it's absolutely bonkers! I so wish I had the access other people have in other countries, I could do so much more! I'm definitely going to get the genetic testing done, you said it was around 2k but who would you recommend? Sorry to ask for help, I need to research your PowerPoint again but have been busy all week fighting everyone in the greenwich borough for an EHCPlan. Im doing my best to school myself in biology and learn about mitochondria, methylation cycle etc. and reading as many medical journals as possible but if there's anything else you would recommend, tests etc? I would gratefully appreciate it! Oh and I am also starting a blog and would appreciate any tips as I'm sure I will get some heat in the UK being a U.K. Parent saying this kind of stuff, but I'm cool with that! Thank you for reading Tanya Moran

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    1. Tanya, since your daughter is still only 3.5 years old and now has such excellent speech, I would not be rushing out to spend 2K on genetic testing. If she was 5 years old non-verbal and self-injuring, it would be a different matter.

      Some people’s autism is mainly related to diet. This is something that really surprises many people, me included.

      Your daughter probably just needs a little “fine tuning” to minimize stereotypy and some other issues. The most important thing is that she has speech at this early age, this does seem to be the best predictor of the future outcome.

      I think some US autism doctors even do consultations by Skype. They seem to deal a lot with the issues your daughter faces.

      The bigger issue is what to do about severe autism, which fortunately your daughter has escaped.

      Delete
    2. Tanya M, thank you for sharing your story - you have truly achieved what many ASD parents dream of.
      Peter's blog is truly a well of wisdom to learn from, an even though it is deep and vast, I think you will find it worthwile to trawl.
      May I ask if you want to expand on some of your own findings? What tests or interventions made you learn the specific causes of your daughter's issues?
      Thank you,

      /Ling

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    3. Tanya, if your daughter responds to diet, you should look into the Failsafe Diet.
      https://www.fedup.com.au
      http://allergy.net.au

      Lots of successes, huge differences, time-proven and under the supervision of the Royal Prince Alfred teaching hospital. I have seen huge benefits in myself and others.

      It's a finetuned, stricter version of the Feingold Diet. Best done with a dietician from the list at
      https://www.fedup.com.au/information/support/failsafe-friendly-dietitians-and-other-health-professionals

      HTH!
      Leen

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  5. Hi Peter. It was amazing to meet you during the conference. It didn’t expect I will have the chance to speak with you when I started to read you blog months ago :) I’m happy there is something happening in the UK. All the best to you :) Dominika

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  6. My congratulations Peter for your presentation at the conference. Thank you very much for kindly mentioning me in this amazing post.
    I am so glad I have known that you are a 'real' person for quite some time now. Your blog has saved me from ignorance and lots of bad mistakes.
    Petra

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  7. Congratulations Peter, it is amazing that you have had the opportunity to show your research in person at the conference and meet regular readers like Petra,also Agnieszka is doing an excellent job, congrats for you too!
    Valentina

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  8. Hi Peter
    Thank you for this blog..I live in the UK and things are quite distressing here in terms of any thing related to autism.. my son is 3.5 and has not even been diagnosed yet ..my son was referred to god knows who all at the age of 2 but we have not gone anywhere with it except some genetic testing which came out negative . Despite all odds we had his stem cell therapy at age of 3 with loads of gains in speech and cognition. We have trialled Bumetanide ( my son doesn't seem to be a responder and had to stop it to get him stem cells ). I have got my hands on clemestine,Bumetanide bhb,propranolol and even Clonezapam without any doctors ..I would rather do something about autism than let my son get in one of those horrible care homes/institutions.. the social services might get me one day but I just play dumb and silently work my way through it..and yes aba from my pocket which is helping enormously. I am just surprised and disappointed that we are so backwards not only in science and research but also in any will to treat or manage autism. People would rather spend time debating treating it or advocating neurodiversity. No time to sit and wait for NHS to come and help us I guess.
    Vicky

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    1. Hi Vicky

      You are in an unenviable position, because you know there are safe therapies out there that doctors use to successfully treat their own children with autism, but under the NHS you cannot access them.

      Dr Frye at the conference told parents, not to try this at home. Prescription drugs need a prescription because they can do harm if misused and lay people are not trained to notice side effects and drug interactions.

      In some countries you can try potentially useful autism interventions under medical supervision. This is the way it should be done, but you cannot do this currently in the United Kingdom.

      If you have the money it is best to go abroad to see an autism doctor.

      You also need to take care about what you read on the internet. If doctors use a therapy on their own kids, that is a good sign.

      Delete
  9. Pickle's mammy24 May 2019 at 15:25

    Peter, I admire your tenacity and open mindedness. I loved hearing what you have done for your son at the conference. I am blown away by what we could know but don't about our children and the aspect of WON'T about all of that. I felt utterly despondent at points during the conference when listening to the UK perspective from yourself and Dr Marlow. I have been doing research and I realize we can get the relevant testing done and take it from there. My son is one of the lucky ones who has responded to therapy and dietary change, I feel sure that investigation and good guidance will help us navigate his learning issues and build on the happy, more social boy who has emerged over his wee lifespan. Your talk really made me sit up and have a think. I think I know the answer to this but would you go down the medical ecological doctor route to investigate or functional nutritional route? I'm pretty sure after the conference that my wee man's issues are gut and allergy related. Thank you.

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    1. Those two paths are very similar, both are all about allergy. In theory you could ask your NHS GP to refer you to an Immunologist. I would at least ask, it costs nothing.

      I would check that whoever you go to see has plenty of experience of dealing with children like yours. If he/she treats lots of kids with autism, ADHD and the like, he may well be able to help.

      Delete
  10. hi I am an italian parent living in tuscany and i love your blog! Dr. Balzola is criticized here, nemo in patria propheta est!! The most famous doctor is an homeopath who is seeing a lot of children , Massimo montinari . I do not know dr. Persico, but I do know parents who were disappointed by him. And now the english style of thinking (respect autism! do not cure it) and neurodiversity movement are entering here and young parents are confused

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    1. I think autism treatment is always going to be controversial.

      I think it is better called something else. For severe autism call it treating Intellectual Disability - that would not be controversial.

      Much of what Italy is particularly good at is treating is inflammatory conditions of the gut and elsewhere (eg PEA and Nerve Growth Factor). Since all these “autism” doctors each have only a few therapies, there are bound to be as many failures as successes. This just means there is no one-stop autism shop. Just as your Tuscany has many fine wines, you need to consider what other regions of Italy have to offer and indeed look across the Atlantic Ocean.

      A well rounded autism therapy will likely need more than one person’s ideas.

      Delete
    2. my
      daughter regressed after age 24 months, a very late onset, so i suspect mitochondrial deficit, but metabolic doctors here only think mitochondrial if you have elevated lactic acid in blood and she has not...you wrote that dr. Kelley is retired and his expertise is missing....she has lysinuria, elevated lysine in urine, but doctors said it does not mean anything...also , she has epileptiform activity of eeg without seizures..i read the post in your blog about subgroup with spikes in eeg, doctors here are adamant: do not treat eeg! big mistake I think!

      Delete
    3. Anonymous, if you live in the US you can do a test that uses a swab sample from inside the cheek to check for mitochondrial disorder and also have epileptiform activity treated. Contact Dr Frye or Dr Rossignol. Dr Chez should be able to treat epileptiform activity, but I am not sure about mito.

      If you live in Europe, contact Dr Agnieszka Wroczyńska and ask her. She is very approachable.

      gdanskautismclinic@gmail.com

      Delete
  11. Peter, thanks so much for your summaries of the conference. I continue to benefit from many of your ideas. I hope to update Dr Agnieszka Wroczyńska on my new trial of Verapamil soon.

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  12. Hi Peter and everybody, I have recovered sufficiently from the horror and tragedy that happened with my daughters cord blood to be able to comment here. First I would like to say I loved your wrap up of the conference. I was in the process of going to Arizona to see dr Frye a few years back, and the whole thing did not happen because their billing department was unable to 1. answer the phone or 2. issue us a bill (for the great sum of 50.000 USD) for about 4 months. I gave up after I repeatedly explained to them that in Europe, we can't pay unitemized bills which contain only the sum and not what I am paying for. They somehow almost expected me to show up with a suitcase of money and save them all this hassle.
    Anyway, what I came here to say was that we have stumbled (partly literally) into a polypill of our own. So what happened was that we got a positive Cunningham beginning of January so we knew she had Pandas..but we could not find an immunologist capable of helping us. So we sort of muddled about and did one round of Amoxicillin which did help somewhat. But then things sort of happened. First she had a small surgery due to a very deeply embedded tick, and they asked for her to take 10 days of amoxicilling. At the same time she had some teeth erupting so we added ibuprofen, and also she stumbled (like I said, literally :)) on her roller and hit her jaw quite hard so we also kept it on for that. We ran out of Neuroprotek and until we could get it in, we replaced it with Aerius. She anyways used Gcmaf long term, which is antiviral. And then, she was again so great on amoxicillin that I decided to see what would happen if we just kept her on it. About 10 days in, she started getting yeasty rashes, so I decided to make the step I had been afraid of for so long, and we added Diflucan. As you can see, we covered basically every inflammatory source known to man. Its been 20 days, and my kid is another kid. I will list some things just to explain the scope of the change: she is (finally!!!!!) drawing things out of her own will, scenes from her cartoons, characters etc, she is able to count with her fingers (for unknown reasons, my kid did not want to use her fingers for counting up until now, she knew how to count but not that) , pronounciation is much clearer, and she is in the middle of learning how to read. Besides all of that, we only use mb12 injections and 15mg of Leucovorin a day.

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    1. ...and also bumetanide, of course. sorry to forget it! :-)

      Delete
    2. Tatjana, that is great news. For personalized autism therapy you will inevitably end up with your own Polypill. You are finding yours.

      You now need to see how to maintain all these gains in the longer term. When you have figured all that out, write it all up as a case history and you can publish it here and try and get it in the medical literature somewhere.

      Delete
  13. This comment has been removed by the author.

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  14. Hi Peter,
    You have done a great job with Monty.I am curious to know how did you manage to get him to have such neat handwriting?Most of the autistic kids have barely legible handwriting.Monty's is beautiful.
    Before Dr Chez put my son on blood pressure meds to control his extreme hyperactivity...he tried L-Carnosine , Ritalin and Neupogen injection .Those did not work at all.He tries any of the meds for 6 months and then moves to the next med.Guanfacine seems to have worked a bit...it makes him very sleepy though even with 0.5 mg .
    Do you know of any blood pressure med like Guanfacine which does not make a child sleepy?
    Thanks
    SB

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    1. SB, Monty has good handwriting thanks to Irena, his assistant for the first 5 years years after diagnosis with autism. I bought lots of training materials, including fine motor skills exercises like writing, but it was Irena who spent the hundreds of hours practicing fine motor skills and indeed gross motor skills.

      Monty went to school part time till until he was about 10 years old. This allowed a lot of 1:1 work at home every day.

      He had good handwriting before he started with his Polypill.

      I think you want an ADHD medicine without troubling side effects.

      I was recently sent a study showing that 30mg a day of Saffron was as effective as Ritalin in ADHD, but has far fewer side effects. The have been other trials of Saffron with encouraging results.

      The problem with Saffron is that most is fake. It is so expensive that people fake it, not just the powder, the strands as well.

      If my son had ADHD I would look into this.

      Delete
  15. Hi Peter, I tried to post this yesterday but I cant see my post so im trying again. I really enjoyed your talk at the conference. It was quite refreshing to see so many passionate and ambitious people all in one place doing their best to understand and treat autism. I thoroughly enjoyed the conference but did struggle with some of the more complex, medical talks especially as this is all brand new to me and my husband. Our son is 2 (26 months) and currently having aba therapy, is on the gaps diet and will shortly have the standard gene test through the NHS. We're considering going to Poland for the testing and checks but not sure whether to start here instead with brainhealth with Stella, Ben and their team. We have plans to see Iona, the osteopath. Its all very overwhelming and we're not sure where to start. My son has regressive autism, regressed around the 13 month mark. He had a a constant bad cold for three months from 10-13 months (no antibiotics, hes never had them) so i think most probably the MMR was the last straw for him. It also doesn't help that I have an autoimmune condition. I suppose my question to you is where would you start if this was your son? Any advice would be greatly appreciated.

    Kind regards,

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    1. If your child was a bumetanide-responder the sooner you start with this drug the better/more normal the next part of his brain development will be. I think this drug can be disease changing if given very young. This is not the case with the other drugs, they help but they cannot undo impaired brain development, they just fine tune its functioning.

      If it was me I would be on the next plane to Gdansk and find out if my child is a bumetanide responder. If he is not, you then look at all the other options, including those you mentioned.

      Delete
  16. Peter, as sodium channel blocker propranolol also has anticonvulsant effect, so I think it is ideal for people with neuronal excitability or epileptiform activity, may be the responders have this profile, like my son, don't know why it is not used as anticonvulsant by neurologists.
    Valentina

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    1. Valentina, at high doses Propranolol does block some sodium channels, but I am not so sure it does at 20 mg twice a day. At high doses that do indeed help control some people's migraines there will be a bigger effect on lowering blood pressure which might not be helpful.

      The good thing is that your son has such a positive response at such a low and safe dose.

      Delete
  17. Hi. Lovely to meet you at the conference. You kindly mentioned you would expand on how the mechanism of mebendazole and butyrate affect some people. I suspect it is beyond just helping good gut bugs and starving pin worms. Thanks so much.

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    1. Hi Mum in Suburbia,

      As I recall, I think you said you have a child whose autism improves on Mebendazole. I will proceed on that basis.
      I have previously proposed Mebendazole as a therapy for some types of autism, because it does at least two very clever things.

      It can be used to regulate Wnt signalling which is dysfunctional in some autism and some cancers; the research is all about cancer. Wnt signalling is involved in determining which genes get turned on and off. Both cancer and autism involve the miss-expression of many genes. Some of these genes may be miss-expressed due to too little or too much Wnt signalling. Modifying Wnt signalling is therefore one way to treat some cancers and indeed some autism. This was what I mentioned in London in relation to dendritric spines and Transcription Factor 4 (TCF4).

      Mebendazole also inhibits some strange-sounding called hedgehog (Hh) signalling. Some cancers involve Hh signalling and if you can block the Hh signalling you should be able to stop the tumour growing. Hedgehog signalling is also known to be dysfunctional in some autism.

      Mebendazole is cheap, safe and can be used long term.
      Mebendazole is a potential cancer therapy and I suggest an autism therapy.

      Butyrate does several clever things. It is an HDAC inhibitor and can change gene expression by a process called epigenetics. In the role as an HDAC inhibitor the dose may be important, give too much and you lose the “good effect”, something similar is possible with Valproate, normally used to treat epilepsy. Butyrate also plays a role in maintain the gut barrier that stops things leaking from the gut into your blood. It may also have a similar role maintaining the blood brain barrier.

      Butyrate also has some helpful anti-inflammatory properties.
      I would be very interested if Mebendazole did improve your child’s autism. If so, what was the effect and how long did it last ??

      Here in the next comment are some references to the science:-

      Delete
    2. Emergence of TNIK inhibitors in cancer therapeutics

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5448614/

      The outcome of patients with metastatic colorectal cancer remains unsatisfactory. To improve patient prognosis, it will be necessary to identify new drug targets based on molecules that are essential for colorectal carcinogenesis, and to develop therapeutics that target such molecules. The great majority of colorectal cancers (>90%) have mutations in at least one Wnt signaling pathway gene. Aberrant activation of Wnt signaling is a major force driving colorectal carcinogenesis. Several therapeutics targeting Wnt pathway molecules, including porcupine, frizzled receptors and tankyrases, have been developed, but none of them have yet been incorporated into clinical practice. Wnt signaling is most frequently activated by loss of function of the adenomatous polyposis coli (APC) tumor suppressor gene. Restoration of APC gene function does not seem to be a realistic therapeutic approach, and, therefore, only Wnt signaling molecules downstream of the APC gene product can be considered as targets for pharmacological intervention. Traf2 and Nck‐interacting protein kinase (TNIK) was identified as a regulatory component of the β‐catenin and T‐cell factor‐4 (TCF‐4) transcriptional complex. Several small‐molecule compounds targeting this protein kinase have been shown to have anti‐tumor effects against various cancers. An anthelmintic agent, mebendazole, was recently identified as a selective inhibitor of TNIK and is under clinical evaluation. TNIK regulates Wnt signaling in the most downstream part of the pathway, and its pharmacological inhibition seems to be a promising therapeutic approach. We demonstrated the feasibility of this approach by developing a small‐molecule TNIK inhibitor, NCB‐0846.

      Repurposing the antihelmintic mebendazole as a hedgehog inhibitor

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297232/

      The hedgehog (Hh) signaling pathway is activated in many types of cancer and therefore presents an attractive target for new anticancer agents. Here we show that mebendazole (MBZ), a benzamidazole with a long history of safe use against nematode infestations and hydatid disease, potently inhibited Hh signaling and slowed the growth of Hh-driven human medulloblastoma cells at clinically attainable concentrations. As an antiparasitic, MBZ avidly binds nematode tubulin and causes inhibition of intestinal microtubule synthesis. In human cells, MBZ suppressed the formation of the primary cilium, a microtubule-based organelle that functions as a signaling hub for Hh pathway activation. The inhibition of Hh signaling by MBZ was unaffected by mutants in the gene that encodes the Hh pathway signaling protein SMO, which are selectively propagated in cell clones that survive treatment with the Hh inhibitor vismodegib. Combination of vismodegib and MBZ resulted in additive Hh signaling inhibition. Because MBZ can be safely administered to adults and children at high doses over extended time periods, we propose that MBZ could be rapidly repurposed and clinically tested as a prospective therapeutic agent for many tumors that are dependent on Hh signaling.

      Delete
  18. Peter, what would be the safest way to take mebendazole,weekly or daily and what dose? Could one have a risk of liver toxicity at 100mg a day for a month?
    Valentina

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    1. Valentina, I do not know the answers. Hopefully "Mum in Suburbia" will update us with her experience.

      As an anti-parasite drug Mebendazole is usually given for a short period of time, but sometimes it is used long term.

      Benzimidazoles in the treatment of alveolar echinococcosis: a comparative study and review of the literature.
      https://www.ncbi.nlm.nih.gov/pubmed/10980173

      Not much crosses into the blood stream and so not much can reach the brain.

      If it did actually have a benefit in some autism, I would expect that you would need to keep taking it.

      The only way you could stumble upon this drug helping your case of autism was if you were using the standard anti-parasite dose.

      Delete
    2. Hi Valentina, We tried it many years ago when we were working with a then-called DAN doc - it was a short course - can’t remember dosage but if I find my old notes I can let you know. It made no difference. But my son never responded overall favorably to any of the “anti-“ drugs. They wrecked his gut too much. Maybe the reason Peter gives is why it wasn’t effective for my son?
      ~Tanya

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    3. Hi Tanya, as it was a short course, you didn't have time to see a difference for good or bad. May be it can be used with liver and gut support long term, but for how long would be safe?
      Valentina

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    4. Thanks so much. We took again this weekend and everyone happy so could actually be case of worms as would be weird for everyone to be affected by same gene issue eg me and hubby too. Tho it is anti inflammatory. We also see what you mentioned with butyrate, too much and effect is gone. I did read mebendazole as side effect can cause seizures but wondered if that is due to dying worms rather than the mere. We seeing absence seizures but suspect always had them as even now with knowledge only seen 3 in a month as so subtle. EEG shows them and will find out more next week/ mebendazole only drug have taken as prefer naturals but cured pandas /pans

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    5. I would only take as per packet but re dose 2 weeks later. I think issue is most kids seem to have and nobody treats so one gets again at school. Ps meant meds not “mere” above.

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  19. I can vouch for the fact there are no MAPS-type doctors in the UK.I have been in a number of groups for autism parents over the years,email groups,like the old Autism Research Institute group,Google groups,Facebook groups,etc,and a common complaint I hear from parents in the UK,is a lack of doctors in the UK,who understand the medical aspects of autism.I generally tell these parents to go to Belgium to see Dr. Ramaekers.

    For a number of years,Dr. Rossignol has not seen all of the patients that come to his clinics on a personal basis.He has gotten kind of selective,and farms many patients out to other doctors on his staff.I know this from parent's reports,and what is posted on his web site.I have had no experience with these other doctors personally,so I can't comment on their quality of care.

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    1. Hi Roger

      There is one MAPS trained doctor in the Republic of Ireland. Amy Herlihy. She can offer teleconsults. We are thinking of seeing her. I believe she trained under Dr Rossignol.

      Delete
  20. Hi Tanya, I was left speechless after your last comment about your older son's depressive episode and really hope he has recovered. Are you satisfied with LDN? Then I suppose you have some good reasons to use it for your younger son. When you say low dose do you mean somewhere from 1 to 5 mg as a monotherapy?
    My son is doing very well on 100mg fluvoxamine divided into two doses. I followed Aspie's research about sigma 1 receptor agonism and he is probably right, fluvoxamine is the most potent agonist among SSRI's.
    Can the sigma-1 receptor agonist fluvoxamine prevent schizophrenia?
    https://www.ncbi.nlm.nih.gov/pubmed/19702566
    Petra

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    1. Thank you Petra. From that link you shared - Interesting that depressive episodes show first, for many years, before onset of schizophrenia. My oldest was prescribed a small dose of lexapro too. He has no psychosis. Depressive and compulsive episodes seemingly brought on by taking on too much in his studies and other academic pursuits. He is stable now doing an outpatient program and we are making him take at least the summer off from school. He has never taken breaks. His choice, not ours. Maybe this is mania for him too? Not sure - time will tell. That is good to know about Prozac. I will save this information and he can talk to his doctor about. As far as LDN monotherapy for my ASD son, now I will take it more seriously and look in to it further. Seems to be helping my oldest.
      I am glad your son is doing well from Aspie’s research. It’s nice the help we can find here. Peter’s blog is the go-to for sure
      ~Tanya

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  21. Hi Peter,
    can you share the names of the Israeli doctors who treat autism ? i'm form Israel and didn't find autism doctors here so i'm seeing an American DAN doctor via Skype. i'm over all happy with him but will be happy to meet new doctors here.

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    1. Carmel, here is the biography of the Israeli doctor, who told me that they are treating people with autism. I do not know what therapies they use, but its says below they have a pharmacological clinic in their autism center.

      Dr Stolar has been working as a clinical director of the Early Childhood Services at the Autism Center of Assaf Harofeh Medical Center, Israel, since 2009. The Autism Center is a national center undertaking diagnosis, treatment and research of autism spectrum disorders, which is a combined project of Assaf Harofeh Medical Center and ALUT (The Israeli National Association for Children with Autism). Dr. Stolar is the Medical Director of “Alutaf”, the Early Intervention Program that consists of eleven daycare centers for treating toddlers with ASD. She established and directed a multi-disciplinary eating disorder clinic for children with ASD (active until 2015) and a pharmacological clinic at the Autism Center.

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  22. Hi Peter, I am glad that went well for you. I have had great success with Dr. Nemecheck's protocol but I have had to use eVNS. He is a smart man and he does listen and is investigating other treatments. He is a great advocate but you are correct in saying he is not the only treatment. His treatment is a great adjunct to other treatments. Dr. Frye is the only doctor I would ever see at that Institution he works in. I am not a fan of that Institution but I have heard of him and of his work. I did use Leucovorin for some time when my son lost speech during the regression and during that time I realized I did not like some of the other ingredients in the Rx so I chose to use already converted form from a supplement company and both had the same effect. He has treatment resistant seizures related to inflammatory states and avoiding wifi/electrosmog has been tremendous in helping with that, along with ketogenic diet, and interventions when things pop up in relation to mast cells. I am curious and in the past I did ask about Bumetanide when I lived in another state and I did not receive access despite attaching research; doctors were fascinated but couldn't take the step
    . I do believe that understanding mitochondria are important as Dr. Frye mentions. Valproate did some horrendous things to my son and I believe that was a multiple hit issue aggravated by the use of Valproate. NAC has been a really great thing and I worry it is going to disappear because it has become so popular it is hard to find in stock now. I am hoping to look into Calcium channels and what is going on in relation to the extreme sensitivity to wireless radiation. I am concerned about the use of calcium channel blockers and so far avoidance is best but it makes living a normal life a lot more challenging. It seems that wifi has a different bandwidth compared to other types of wireless radiation from say cell masts so I wonder if that is why it is so much worse either in high cell phone use areas or in Industrial grade wifi areas. I wonder if TGEN is doing any work in Genome. I think it might be in the rare disease area. As a long time user of the Ketogenic Diet I have to say it is very powerful. I was having dysautonomia with my kiddo so I think that eVNS was definately necessary to decrease distention along with the other aspects of Nemecheck protocol. I think the dysautonomia was made worse from environmental exposures. Belpomme's work is wonderful in putting the pieces together on effects of the brain. So that is my experience.

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  23. Hi Peter, what would be the best dose of clemastine?
    Valentina

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    1. Valentina, I am using 1mg once a day, given in the evening. This is less than the allergy dose. There appear to be some genuine benefits in some people with autism even at this low dose.

      In someone with MS a higher dose would be wise, up to the point where the side effect, usually drowsiness, becomes an issue. In MS trials they use 4mg twice a day, the morning dose makes them sleepy all day, but their myelin grows back.

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    2. Valentina and Peter

      I've used up to 3 mg a day, starting with 1 mg in the evening. I introduced other treatments in last half a year, so I can't be sure, but there seems to be genuine effect of clemastine in terms of motor planning improvement. In my son this affects almost all aspects of his life and so is very important.

      The most impressive improvement was coincident with 3 mg dose given for a few weeks. Drowsiness was not at all an issue, but it caused dry mouth and I reduced to 2 mg, which is the current dose and is well tolerated.

      Peter, is it possible that the effect on myelin is dose dependent and in children with autism and severe motor planning/fine or gross motor skills dysfunction it is worth to increase the clemastine dose up to the tolerance limit to see if it brings more benefit?

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    3. Agnieszka, the US child psychiatrist suggesting clemastine usage had the opinion that a low dose was best and not to be in a hurry.

      I think long term continued use probably is the key and not to use a dose that might cause side-effects and cause you to stop.

      For a 6 to 12 year old the maximum daily dose for allergy is 4mg.

      For above 12 years the maximum dose is 8mg a day.

      I think the effect will be both dose dependent and dependent on the duration of usage.

      The effect is both on myelination and microglial ramification (calming activated microglia). These effects might require different doses, perhaps at a lower dose you get one effect but not the other.

      I think you just have to experiment within the known safe limits and find the lowest dose that gives the effect you want.

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    4. Thanks Peter and Agnieszka, I am glad that your sons are doing so well with clemastine, I would like to try 2 mg, but my sister could not get it and I ordered it from e bay, Clemast is called from India, and it is a bit expensive, it comes from U S. So, I will use 1.34 mg, as this is the amount per tablet.
      Valentina

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  24. I recently found a product range I haven't seen before, and am curious if someone has an opinion on it:
    It consists of several types of patches for delivering multivitamins, B vitamins, glutathione boosters as well as other things via the skin. Website: https://www.patchmd.com/All-Products.html

    Thinking of how many autistic kids have food/taste/eating issues, this solution does look very appealing. While it may not help severe autism, it does lessen the number of interventions through the oral route.
    But does it work?

    /Ling

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  25. I always found this blog very interesting and very rich of information as a father of autistic twin 4 years girls. if I am allowed, any comments or more info on the recent results of Caltech or the previous one from Arizona State University about Microbiota Transfer Therapy? Thanks

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