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Wednesday, 13 November 2019

Dentistry Gangnam-Style vs Native American (Papoose) - Style

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There have been previous posts in this blog about dental treatment for those with autism.  I am sure readers with older children have already found what works for them.  Many people are not regular readers, so there is some repetition in today’s post.

There is no single best solution for the dentist because your options are very different depending on where you live and your budget.

In the US you have the widest choice, but they are all pricey.

In other countries there are more legal restrictions. Some countries with universal healthcare have well organised free solutions for those with special needs, but you may have little choice.

In many countries all the options are pretty bad.

It looks like US dentists are taught two broad options: -

·        Sedation

·        Immobilization


I think they are often missing a missing a third option, D-Termined or similar, which I think is the best one.


Sedation

There are several levels of sedation, all the way up to deep sedation and finally general anesthetic.

There are legal restrictions on how far dentists can go with sedation and this varies widely depending on where you live.

Where we live the dental clinic can give you local anesthetic and no more. In the UK light sedation and moderate sedation is permitted.  For a higher degree of sedation, you need to be in a hospital, with all the emergency back-up.

Intravenous (I/V) sedation is quite common for those with anxiety, but you have to sit still while you are connected up.

General anesthetic seems to be very commonly used for special needs kids and I presume the adults they become, of whom we hear very little.


Immobilization

I had never heard of immobilization, probably because in many countries it is illegal.
In the US immobilization is widely known.  Some people think it is great and some people do not.

The patient is physically attached to the dental chair so that they cannot move.



D-Termined or similar

There is a third option, which you might just call “good dentistry”.  I eventually found two dentists like this.  They break everything down into steps and make sure the child gets familiarized with each step, before moving on to the next.  They are not in a hurry and they try to make the experience as fun as possible, inflating surgical gloves like a balloon etc.

One US dentist developed his own system in the belief that most people with special needs can be treated conventionally and should not need to resort to general anesthetic.

Dr Tesini named his method the D-Termined program. More than a decade ago he made a training DVD for fellow dentists which was available for free, thanks to a supportive charity. Much more recently he published a peer-reviewed paper showing its effectiveness at reducing the need for general anesthetic.

D-Termined is ABA applied to dentistry.  Everything is broken down into simple steps.  Once you have mastered being able to sit still in the chair and keep your arms still, you move on to learn about all the gadgets the dentist can use.  Eventually, after a few visits, you move on to a simple actual procedure, like polishing/de-scaling teeth.    
Keeping you arms still is step our new dentist does not teach/insist on.  This is a mistake, since it can be taught and flapping arms can be dangerous.

I did acquire the DVD training by Dr Tesini ten years ago and tried without success to find a local dentist interested to apply it.

You might wonder while all pediatric dentists are not at least aware of the D-Termined program.  Apparently having learned with D-Termined most patients can successfully transfer to any other dentist.  This would save a huge amount of money in admissions to hospital for dental work.

Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder. 

PURPOSE:

The purpose of this study was to compare the effectiveness of the D-TERMINED Program with standard behavior guidance techniques (SBGTs) used for children with autism spectrum disorder (ASD) in a private dental setting.

METHODS:

A retrospective data analysis was performed from records of children with ASD who received treatment using either the D-TERMINED program or SBGTs at two private dental practices. Data were analyzed using chi-square, Fisher's exact, Wilcoxon Signed Rank, and Mann-Whitney U tests and logistic regression.

RESULTS:

Forty-four charts (22 in each group) were selected from office visits between 1999 and 2012. Children in the D-TERMINED group were significantly younger (P=0.01). There were no significant differences between groups regarding gender and dental care characteristics. Patients treated with the D-TERMINED program showed a significantly greater improvement in behavioral scores compared to the control group (P=0.03). Additionally, children treated with the D-TERMINED program had significantly lower referrals for dental treatment under general anesthesia (P=0.04).

CONCLUSION:

The D-TERMINED program may help children with ASD learn the cooperation skills necessary to receive treatment in a dental practice, which might impact health care cost effectiveness.

In Monty’s dental training program, we practised at home with an electric drill. Monty made a burning smell drilling into some old pieces of oak. So, he got used to strange sounds, vibrations and smells.  We practised with a syringe how the anesthetic is applied.


Costs in the US

A survey by TheWealthyDentist.com reports an average cost of $482 for IV sedation. General anesthesia can cost $300-$1,000 or more and averages about $600-$700, depending on the complexity of dental procedure.


Monty and the Dental Marathon

About a month ago Monty finished his dental marathon of fifteen visits to the dentist since March.  It was entirely successful but it did take much longer than I had expected.

I got to learn about restorative dentistry. In Monty’s case his decay was deep and could not be repaired leaving the nerve intact in a single visit to the dentist.  A live tooth has the nerve intact and has its own blood supply.  I wanted his two problematic teeth to retain their nerves.

The dentist drills out as much decay as possible and then adds layer of Calcium Hydroxide, which is very alkaline.  This then causes the nerve to withdraw slightly and slowly the pulp above the nerve is converted to dentine (so-called reparative dentine), you add a temporary filling and wait for 6-7 weeks.  Then you remove the temporary filling, drill a bit deeper, again avoiding the nerve, add a layer of calcium hydroxide and another temporary filling and wait another 6-7 weeks. The end result is that you can remove deep decay without removing the nerve.

On two rear teeth Monty had temporary fillings four times before he got the final permanent filling.  That means being injected with local anesthetic ten times and ten trips to the dentist.

In addition, he has visits for fissure sealant to be applied on the remaining teeth.

Our original “nice dentist” from 4 years ago went on an extended maternity leave and it was toothache that prompted the need for a different one. Fortunately, we found a nice new dentist who in the last couple of years developed an interest in treating autistic kids. Even she was not keen to work on the rear teeth.  She can only give local anesthetic; she cannot use US-style physical immobilization. Her suggestion was to make an appointment for dentistry under general anesthetic.  So off we went to the local University hospital where, as expected, they wanted to extract both teeth under general anesthetic, all they do is so-called “radical dentistry”, but even for this option you wait 3-4 months for an appointment.

I asked why can you not save the teeth?  Like with a typical child.

I was told that Monty would struggle with local anesthetic, the rear teeth are particularly difficult.  Some kids with autism can struggle with the loss of sensation and end up biting themselves quite badly.

I said not to worry about the local anesthetic, we would easily get him through that part.  Yes, he has autism, but he is no longer typically autistic - he is now "different".  We do not avoid challenges; we try to overcome them.

Our new dentist basically said she would only try and repair the teeth if there was a plan B for emergency extraction.  Such an extraction is not possible at the government hospital and she would not be able to do it either.

More than 10 years ago when Monty needed emergency dental work, we had to take him to a neighbouring country where it is legal to have general anesthetic in a dental clinic.

Fortunately, a local private medical clinic that does minor operations has recently started doing some dentistry and they can offer general anaesthetic.  So off I went there to see if they would help.  I met a very pleasant dental surgeon who had just relocated home from Chile and he also thought teeth should be repaired and not extracted.  He was happy to provide the plan B.

Feeling much happier, our dentist agreed to proceed and our dental marathon began.

We started in winter, so no allergy-affected behaviour, and things went very well.  The dentist told me “it was exactly as you said it would be”, Monty could comply with treatment like any typical teenager.  Anaesthetic no problem, drilling no problem.  Monty get to choose the music during the dental procedures.  It was stress free.

As we moved to spring and then summer, compliance did fade slightly.  The worst day and in fact the only really tough visit was the for the final drilling and filling on the lower tooth.  The anesthetic did not seem to have gone in exactly the right place, Monty was not happy, the anesthetic was repeated, to no avail.  I had to keep him and indeed the dentist as calm as possible.  I had to stand in front of the dental chair and talk to Monty the entire time, reassuring him, counting up to 20, down from 20, having him pick the number etc to distract him from the procedure.
  
That was a visit the dentist will not forget.  Monty on the other hand got out of the chair as if nothing had happened.

For dental visit number 15 and the final drilling and filling on the upper tooth I had started to use DMF and Azosemide; there was no anxiety, everything was like in the winter.  Monty was a model patient and the dentist was sad that we had finished our marathon.

Dentistry is not expensive where we live, so our 15 visits probably cost about the price of one composite adult filling in the US.


Gangnam Style

Monty became very comfortable with his visits to the dentist, getting the dental assistant to put his favourite music to play. For his final visit getting permanent filling number two, he requested “Gangnam Style”. With his mouth full of cotton wool (saliva absorbers) I had no idea what he was saying, but the dentist understood and it was time for K-pop.



Papoose Board









Until very recently I had never heard of the Papoose Board and its use in dentistry; where I come from it is actually illegal to use it.

A papoose means a native American child. A papoose board is like a straight jacket, but it immobilizes the entire body, including your head.  It is like being encased in Velcro straps.

During my many visits to the dentist I learnt that a common problem treating children with autism is that they do not sit still in the dental chair and they flap their arms about which can make it difficult to get any work done.  It usually requires the help of the dental assistant so that the dentist has two arms available for her work.

So, you can see where the idea if strapping the child to the chair comes from.

Personally, I cannot think of anything worse during visit to the dentist than having my arms strapped to my body for 30-60 minutes. What if you want to itch your nose? You are non-verbal so you cannot ask the dentist to do it for you.  That is just me.

There are horror stories in the US media about the use of a Papoose board, but there was a recent post on the NCSA website saying how great it was for one child with severe autism.  It is a case of finding what works for your n=1 case.


In Dental Care for Severe Autism, a Papoose Board Comes to the Rescue



Conclusion

Finding dental care for someone with autism is very often a huge problem.  In some countries you get free care that is well organized, but you may not get any choice as to what is done, or indeed how.

Many people with autism routinely have all procedures using general anesthetic, that is OK if you have a qualified anesthetist monitoring the situation.  It must be better to learn how to sit in the chair and have regular dentistry using local anesthetic.  It is much cheaper and much safer.

I personally think Gangnam style dentistry is much more preferable to the native American style.  Yes, it will take longer, at least until the first filling has been completed successfully.

There clearly are people with autism who accept being strapped to the dental chair with Velcro and some who enjoy it. Temple Grandin is a big fan of squeezing/pressure therapy, so I expect she would enjoy being strapped to a Papoose Board.

Another thing I came across was that parents in some countries are not present while the child is having the dental procedure. I came across one lady furious to find out that her child was strapped up in a Papoose board, she was totally unaware it was being used, until she left the waiting room to look for her child.  I suppose it depends if having the parent present is helpful, or just adding to the stress - both cases are possible.  

An old post from 2014:-


       A Surprise at the Dentist





37 comments:

  1. My son has been progressively much better at the dentist over the years, but I still need to hold his arms down some of the time even though I had to be a human straightjacket back when he was 4. The dentists at the pracrice we go to are known to be be special needs friendly so they have no problem with this unorthodox way of doing things. I am significantly above average in muscle size and strength so I can still do this safely even though my 10 year old is 160 pounds plus and very strong himself. I am not sure how much longer I will be relatively stronger than him to do this job, but with his recent improvements hopefully I won't need to hold his arms down anymore even though he is great now about keeping his mouth open and following the dentists commands.

    I used to have to do the same thing for haircuts but the last couple of years I have not had to do a thing except stand nearby in case he flipped out for aome reason because you can never let your guard down in these situations unless you want to risk law enforcement involvement or a lawsuit.

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  2. i agree with your brilliant post.....my daughter lost a milktooth at age 4 and developped her first permanent tooth at same age...permanent teeth were very
    precocious ...and very precocious was tooth decay so we have a long long history of dental care and dental troubles...to make things worse, at night she has bruxism. Her anterior permanent incisors grew protruding above her milkteeth and milkteeth did not fall by themselves,they were pulled out by dentist, who said " it can happen" I wonder if this is autism related in some way.... carla marta

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    1. carla marta, premature tooth eruption is a biomarker for ADNP mutation. Activity-dependent neuroprotective protein (ADNP) is the most frequent de novo mutated ASD-related gene.

      https://www.nature.com/articles/tp201727

      It might be a good idea to ask your doctor to check this gene.

      I suggest other parents who notice unusual physical features/developments like this to look them up and see if they are connected to a specific autism variant.

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    2. very interesting, i want to investigate this

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    3. Having a child with a genetic mutation that causes both cognitive deficiencies and tooth abnormalities I have definitely looked at the subject.
      With this combo I really think there are chances to get a result on genetic testing, but not only one gene.

      /Ling

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    4. Ling, ideally genetic testing at every diagnosis of autism in a child is the way to go. It is not done because it costs a lot of money and the “yield” in terms of actionable therapy is very low. Many therapies would be experimental and that is not the way of modern medicine, it would open Pandora’s box.

      I think all girls with severe autism and MR/ID should have exome sequencing (WES) because it is very likely that the test will yield a precise diagnosis. Girls are unlikely to have severe polygenic (multiple hit) autism, they have built in protection (a second X chromosome and neuroprotective female hormones).

      Using WES in polygenic autism is unlikely to yield much. There are differentially expressed genes (DEGs) but no single “smoking gun” to find.

      I was recently contacted by the father of an adult with severe autism who has recently had genetic testing that revealed a single gene dysfunction that relates to PAK1, so should be potentially treatable, albeit experimentally. No surprise that it is again a female.

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    5. my daughter is followed at Genetic Medical Unit of Siena....they did exome sequencing with 150 autistic patients..I am angry because they never offered WES for my daughter...i suspect because she does not have obvious dysmorphic signs.... COD. C01 Lesson from exome analysis of 150 trios with ASD

      F. Mari1,2, A. Currò1,2, C. Fallerini1 , D. Lopergolo1,2, M. Baldassarri1,2, V. Lamacchia1,2, M.G. Cannone1 , S. Croce1 , S. Daga1 , G. Doddato1 , E. Gelli1 , A. Giliberti1 , E. Lazzarini1 , F. Lorenzetti1 , M. Palmieri1 , S. Amitrano2 , M. Bruttini1,2, F.T. Papa1 , R. Tita2 , C. Lorizzo2 , M.A. Mencarelli2 , A.M. Pinto2 , S. Buoni3 , L. Radice2 , S. Grosso4 , R. Canitano3 , F. Ariani1,2, S. De Rubeis5 , A. Renieri1,2 1Medical Genetics, University of Siena, Siena, Italy 2Genetica Medica, Azienda Ospedaliera Universitaria Senese, Siena, Italy 3Child Neuropsychiatry, Azienda Ospedaliera Universitaria Senese, Siena, Italy 4Clinical Pediatrics, Department of Molecular Medicine and Development, University of Siena, Siena, Italy 5Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA

      Here, we present data obtained from whole exome sequencing (WES) in 150 patients attending the Medical Genetics Unit of Siena and having a diagnosis of Autism Spectrum Disorders (ASD). All these patients have been evaluated by expert clinicians of our Institution and pathogenic CNVs have been ruled out as the cause of the disease. The project is part of an International effort aiming at identifying the genetic causes of ASD (Autism Sequencing Consortium, Mount Sinai). WES identified the genetic basis of disease in 36% of patients: 14% were already known disease genes and 22% were novel candidates. Among the known genes, SCN2A is recurrently mutated. Interestingly, SCN2A and KCNQ3 mutated patients do not show epilepsy, the key feature of the known associated phenotype. Our data also reinforce the association between SYNGAP1 and PHIP genes with ASD. From a clinical point of view, the identification of PHIP mutations teaches us not to underestimate more common signs such as obesity. PHIP binds the pleckstrin homology domain of insulin receptor substrate-1, a gene modulating insulin signalling and obesity can be a key clinical handle for the diagnosis of PHIP-related neurodevelopmental disorder. More attention has also to be paid to dysmorphology even if no other congenital anomalies are observed. PHIP patients show distinct facial features that can be recognizable such as large ears, thick eyebrows, upturned nose and thin lips. Among the X-linked mutated genes, we confirmed SLC6A8 and PCDH19 as ASD genes in males and females, respectively. Among the new candidates, we identified BCORL1, SLC12A2, CABLES1 and LYPLA2. BCORL1 is expressed in brain and reported mutated in two brothers with severe intellectual disability; SLC12A2 is a NaK-Cl cotransporter highly expressed in human developing cortical neurons; CABLES1 is a gene required for embryonic neural development and LYPLA2 is a gene needed for axon growth and maintenance differentially expressed in ASD. In conclusion, in our experience, WES analysis has a high success rate in ASD patients. Moreover, these data confirm that ASD is an heterogeneous collection of different rare disorders. Reverse phenotyping in large cohorts will help to better characterize the distinct clinical signs associated to each ASD gene.carla marta

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    6. Hi Carla,

      Would you kindly share the link to the paper you have quoted from? I can't seem to find it when I search.

      Thanks!

      AJ

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    7. http://congresso.sigu.net/2018/documenti/Abstract.pdf

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    8. Thank you Carla!

      By the way, we did the GeneDx Xpanded Autism / ID panel, paid for it out of pocket, and it was expensive but worth it as it is a trio that identified a de novo mutation in our child that is likely the cause of her issues.

      They test about 2,500 genes that are associated with AS / ID

      You can find out about the test here:

      https://www.genedx.com/test-catalog/available-tests/autismid-xpanded-panel/

      I hope this is helpful.

      AJ

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    9. I don't quite understand the approach to the genetic testing costs where I live. In Poland WES at Medical University of Warsaw costs ~900EUR and you will not get it funded by the national health care system for a child diagnosed with autism, yet every school is paid ~1000 EUR every month for every student with ASD to accommodate their special needs.

      WES/WGS prices tend to decrease all over the world, so it's not really unaffordable nowadays. As an example, this company in the US is going to offer WES plus counseling in case of actionable result for ~700 EUR and they aim to reduce the price further to ~450 EUR:
      https://www.probablygenetic.com

      Severe autism is expensive anyways.

      Here is an example how WES along with other relevant diagnostics may contribute to the outcome:
      https://www.ncbi.nlm.nih.gov/pubmed/28322502
      "Mystery solved: Our son's autism and extreme self-injury is genetic and treatable."

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    10. Agnieszka, another "rare" PAK mutation, like the rare one someone else told me about in their daughter a month ago. The good thing is that it shows that the Treatable-ID people in Vancouver, I keep mentioning, are effective in practice.

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  3. Hello Peter and Community,

    I read a very interesting article a couple of days ago and it made me wonder if the process of Integrated Stress Response could be affected at least some ASD kids:

    https://medicalxpress.com/news/2019-11-protein-homeostasis-memory-deficits-syndrome.html

    While the story is about T21 kids, the same process could be impacting at least some ASD kids (in my opinion) depending on the cause of their ASD.

    So I took a quick look and voila:

    https://www.sfari.org/funded-project/dysregulation-of-the-integrated-stress-response-pathway-in-fragile-x-syndrome/

    It's being studies at McGill University in Montreal

    So I decided to look into ISR to see if there were any options and … https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6600673/

    Quercetin! Interestingly enough, the title of the paper speaks to Quercetin improving memory due to ISR!

    Of course, Quercetin isn't very bioavailable so a quercetin phytosome may be a better option than standard but it may be worth trialing just in case ISR is a factor.

    AJ

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    1. And a bit more info for additional reading:

      https://braincanada.ca/funded_grants/dysregulation-of-integrated-stress-response-isr-pathway-in-fragile-x-syndrome-and-autism/

      https://www.biorxiv.org/content/10.1101/460840v2.full

      https://www.cell.com/neuron/pdf/S0896-6273(17)30926-1.pdf

      https://www.researchgate.net/publication/318342262_Inhibition_of_the_integrated_stress_response_reverses_cognitive_deficits_after_traumatic_brain_injury

      AJ

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    2. AJ,
      I'm very much in for the ISR and/or the UPR (unfolded protein response). I'm just not sure it's best to just inhibit it totally, it would perhaps be better to enhance certain parts of it (chaperone production, some HSPs) and repress others. Yes, I know, hard to tell where one would like to intervene anyways, unless you have a mutation in one the involved genes of course. (I might actually have one of those.)
      A related question is of course: what is the price you pay for inhibiting the ISR?
      I'm also curious if it has something to do with the "cell danger response" as per Naviaux, except for the common wording.
      Anyway, there are many many interventions in this area. ISRIB, TUDCA, Fisetin, Bacopa, Guanabenz, Arctigenin, even Curcumin and Withaferin-A have some roles to play.

      /Ling

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  4. I'm in big need of suggestions for repressing CB1 (cannabinoid 1) receptor signaling.
    Rimonabant looks like research drug, and CBD seems to affect almost everything else too.

    Hoping that Peter or the clever community can come up with something else for this. It's important.

    /Ling

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  5. Hi Ling,

    When you say it's important, you know your friends here will get right on it.

    I've done a quick search, and will keep looking for you, but in the meantime, I thought you may find the following of interest:

    https://www.hindawi.com/journals/ecam/2015/238482/

    A look at table 2 seems to identify the following:

    - Yangoin (via Kava)
    - Betulinic Acid (Chaga mushroom) - *Betulinic Acid is also a CB2 agonist
    - Curcumin ( I would get a version like Meriva for absorption)
    - 18β-Glycyrrhetinic acid (Licorice)

    This is just after a quick review but I wanted to post just in case this is helpful!

    AJ

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    1. Thank you AJ! I could hug you!
      :-D

      /Ling

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    2. I'm so happy it's helpful Ling! :-)

      I really hope you've found a pathway that can help.

      AJ

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  6. Ling, you might need to look across the Baltic to your near neighbour. They even have an OTC product (meant for weight loss)

    CB1 receptor antibodies

    Antibodies of the CB1 receptor have been developed and introduced into clinical use in Russia.[27] They include brizantin (Russian: Бризантин®) and dietressa (Russian: Диетресса®).[27] Brizantin is indicated for the treatment of nicotine withdrawal and smoking cessation and dietressa is indicated for weight loss.[27] Dietressa is available over-the-counter in Russia.[27][1]

    https://clinicaltrials.gov/ct2/show/NCT01570829

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    1. https://materiamedica.ru/en/catalogue/innovative-medicines/dietressa/

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  7. Oh, nice finding Peter! I think I've got an acute urge to hug you too. :)

    I've just found out that CB1 signaling can affect a mechanism implicated high up in my daughter's syndrome, and also in at least two other syndromes corresponding to interacting genes. All involve ID and language/apraxia issues. By quenching CB1 signaling, it might even help corpus callosum formation (which I just learned has a growth spurt between the ages of 9-12 years in humans).

    Now I have a lot to digest!

    /Ling


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  8. Since I cannot find the original comment thread on here I will post my message here.

    Peter, do you you think that this drug (Pimavanserin, 5HT2A inverse agonist) might have any therapeutic potential for Asperger's? The first time I took LSD I was able to very briefly experience mental visualization and the ability to read emotions on one's face for the first time in my life. Do you think a reverse tolerance effect could occur with this given the reduced 5HT2A receptors found in Asperger's? I am very interested in possibly trialing this thank you for sharing, Ling.

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    1. Pimavanserin was recently trialed in schizophrenia and while not very effective it was found to be well tolerated, so you could ask your doctor for a trial in Asperger’s.

      I think a 5HT2A agonist might be a better choice in your case. These are generally controlled substances like LSD, but you can actually upregulate 5HT2A and stay on the right side of the law.

      Activating CB2 will upregulate 5HT2A. You can activate CB2 with PEA (a legal supplement) or with cannabis (which may or may not be legal, depending where you live).

      Reverse tolerance, when you gradually need less and less of a drug, is interesting. It is reported by Aspies and others that LSD has permanent effects.

      I just had a quick google and saw that “Long-lasting alterations in 5-HT2A receptor after a binge regimen of methamphetamine in mice”.

      It is clear why many Aspies use recreational drugs, just as it is clear why people with Schizophrenia smoke. Both groups are achieving a “medical benefit”, but not without other health or legal problems.

      I think PEA (Palmitoylethanolamide) will be less effective, but it is safe and entirely legal.

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    2. First off thank you for the reply. I’m glad you mentioned CB2 agonists and their ability to upregulate 5HT2a receptors as I have more of an interest in them now. According to the 5HT2a Wikipedia page it says, “receptor upregulation is the exception rather than the rule” (for antagonists) so I supposed it’s better that I haven’t really looked into Pimavanserin more then.

      The CB2 receptor Wikipedia lists Minocycline as a CB2 agonist. I can’t really find any other info online reaffirming this so is it actually an agonist then? This is the paper the Wiki references for this.

      https://academic.oup.com/cercor/article/25/1/35/365149

      Also aren’t antibiotics generally bad for one’s gut Microbiome? In other words if I were to trial this would it be safe for long-term or even short-term use for my good Microbiome bacteria?

      I am looking into PEA now as well thank you again. I am going to start looking into possible Serotonin therapies too since I don’t really believe using GABA therapies will lead me to anything after an unsuccessful trial I had with Arbaclofen.

      I also experience a short sensory relief/anxiolytic effect for the few times that I’ve actually smoked. I find the less nicotine consumed the more sustained the effect is which is in line from what I’ve read on your blog of course. I plan to trial Chantix somewhat soon for this reason. Odd since I wasn’t able to find any relief with Roflumilast for its supposed sensory gating effect. I'm aslo currently looking into getting a TENS unit and an ear clip.

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    3. Long term use of antibiotics is not advised, so Minocycline is not a good choice. For tiny doses of nicotine a small piece of a nicotine patch or nicotine gum might be worth a try.

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  9. Hi, can someone recommend me where can I buy bumetanide? I've gone to 2 pharmacies here in Portugal and the people who were attending me didn't even know what is it and it wasn't available on pharmacies. Btw I've took NAC in the past ( 600mg per day ) and my OCD hallmarks didn't improve I think that NAC didnt do nothing to me, it was because of the dosage? My goal now is to improve my speech ( want to be able to do speeches and say complex sentences and I want to improve my mood as well ).

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    1. Tradename for Bumetanide in Spain is Fordiuran, possibly in Portugal too.
      NAC 600 could be too low a dose, I think Monty is using 2.4g/day (look at the PolyPill page of this blog)

      /Ling

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    2. You can order the Mexican version of Bumetanide by searching for it by one of its trade names "Miccil" on eBay. Good luck to you.

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  10. Here is some new research concerning butyrate producing microbes in the gut and their effects in enhancing pro-longevity hormone called FGF21 which with respect to autism also causes reduced mTOR signaling:

    Press Release:

    https://www.sciencedaily.com/releases/2019/11/191114103128.htm

    Paper:

    https://stm.sciencemag.org/content/11/518/eaau4760

    What is also very interesting is that as the mice aged in the experiment, their gut microbiota became less adept at producing butyrate which meant less production of FGF21 which is also important for neurogenesis. Nevertheless, the aging effects of diminished FGF21 production could be rescued with SODIUM BUTYRATE supplementation.

    I know sodium butyrate and supplementing with dietary fiber to increase sodium butyrate has been discussed many times on this blog already, but this research is remarkable with respect to the possible benefits of sodium butyrate supplementation and the list of benefits likely critical to autism (reduced mTOR, increased neurogenesis, etc.).

    It is hypothesized that C-section delivered babies (which have a higher risk of autism) get a poor start on life concerning their microbiome, so perhaps lack of butyrate production might have a role to play at some point post-natally in some people with idiopathic autism (just speculation).

    Sodium butyrate is cheap so in light of this research I may give it another try even though I already supplement fiber for the purposes of butyrate production already.

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    1. Tyler, Sodium Butyrate is also an HDAC inhibitor. This has been shown to improve beta cell proliferation in models of diabetes, so is interesting for those with type 1 or type 2 diabetes. In some types of autism I think you can have too much inhibition of HDAC. We did have comments on this a long time ago when the commenter reported 500mg of butyrate was beneficial but 1,000mg was not.

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    2. Yah I now remember you mentioning that dosage was a major factor. I wonder if the immune system and microbiome has a way of regulating the proper amount of butyrate production for both western diets that are low in fiber and non-western diets that typically are high in fiber.

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    3. Sodium butyrate in schizophrenic mice - maybe?

      https://www.ncbi.nlm.nih.gov/pubmed/31149324

      /Ling

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    4. That link is actually regarding sodium benzoate, not butyrate, and the research with sodium benzoate has progressed to mid-stage trials in humans. The medication will be called NaBen.

      It appears the trials of sodium butyrate in schizophrenia have been withdrawn because they were unable to blind the study because sodium butyrate has a distinct smell.

      https://clinicaltrials.gov/ct2/show/NCT03010865

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    5. You are absolutely right, for some reason I mix up sodium butyrate and benzoate often. Looks like we learned a lot anyway!

      /Ling

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    6. Sodium Benzoate is extremely cheap and widely available. It likely will be therapeutic for some. Sodium Butyrate is more expensive and is therapeutic for some. Both have been covered in previous posts.

      People who are histamine intolerant should avoid sodium benzoate.

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    7. Yes, Sodium Butyrate smells and tastes like puke. Was really hard to make work with my son like 6-7 years ago when I first used it because he won't swallow pills. I had to dilute it in milk with protein powder plus other methods of masking the taste to get him to ingest it. Eventually, I gave up because of how difficult it all was and that he stopped liking my concoction which still tasted pretty terrible in spite of my best efforts.

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