UA-45667900-1

Monday, 12 December 2016

Treating Autism – Destined to Remain a Fringe Activity?



When I started this blog I was actually serious about a widely available Polypill for autism.  Over time I accepted that this really is an idea ahead of its time, so my Polypill has become more an example of personalized medicine.  I was pleased that at least one other very different Polypill solution exists to treat a separate (Swiss) sub-type of autism, but based on the same science. No doubt more exist, but remain hidden.

There is of course also the Dr Kelley, formerly of Johns Hopkins, mito-cocktail for regressive autism. I think this could be further improved, just based on what has been covered in this blog.

Instead of producing a Polypill, I decided to continue my research and take the much easier option of writing a book about it, when I have “finished”.  So another cranky book on autism, but my one.

As I collect together all the ideas in this blog and in the unpublished posts, I also started to fill in gaps in the bigger story.  I cannot ignore the hundreds of people already “treating” autism and there are numerous books on the subject, most of which I would put in the cranky category.  Organizations like DAN! (Defeat Autism Now) have come and gone, but the US has numerous organizations like TACA, MAPS, Autism One, Generation Rescue etc, all with their own treatments and literally hundreds of practitioners, be they Doctors of Medicine, Doctors of Osteopathic Medicine, Doctors of Chiropractic, or Doctors of Naturopathic Medicine.  This all makes most mainstream doctors cringe, including most of my doctor relatives.

So are there any autism doctors out there I would pay my money to consult? I thought about it and actually there are not.  I would be happy to have a coffee with Dr Frye in Arkansas, Dr Chez in Sacramento, or talk bumetanide with Dr Lemmonier, or even talk inborn errors of the metabolism with the Dr Karnebeek in Vancouver.  Another interesting one is Knut Wittkowski, the biostatistician from an earlier post, whose noble aim is to use his statistical analysis of genetic studies to prevent mutism in future autism.  In effect, by giving Mefenamic acid (Ponstan) for a few months at the age of two you might switch trajectory from non-verbal severe autism towards Asperger's type autism.(www.ASDERA.com)

There are numerous articles published to dissuade parents from trying to treat autism, like this new one from the Simons Foundation’s editorially independent Spectrum News:-

I agree with 90% of this article and would have agreed with 100% of it just five years ago.

I did actually suggest to Spectrum News that they consider publishing at least one article about translating all that science they write about into usable therapy.  They replied that they considered the idea, but do not want to pursue it.

So back to the book, which is slowly taking shape.

I did wonder just how to position the book and how much science to load it with.  I ended up deciding to make it as readable as possible and just have the heavy science in one part, which people can skip altogether if they choose.  I did originally talk to a scientific publisher, but I think their idea of an autism science book may be rather less mass market.

For me the important thing is that I have found therapies that reduce the severity of my son’s autism and improve cognition.  These improvements are reversible, as they should be. It is a bonus that many other people benefit from some of the mentioned therapies and a small number of people respond in a near identical way to my son.

The concept of treating autism will only gradually start to become mainstream when the first drug is approved by the FDA or the EMA (European Medicines Agency), so probably Bumetanide in Europe and possibly CM-AT in the US. Even then, I do not see your local doctor in a rush to prescribe these drugs; they will likely only go to those who read up on it and insist on having them.

Autism will remain highly difficult to treat and because it is not degenerative and does not directly kill you, it will generally just be avoided.  I really do not blame such doctors; they have more to lose than gain.

So for the foreseeable future treating autism will remain a fringe (or cringe) activity, where you are best off self-treating. You have something to gain and nothing to lose.








39 comments:

  1. Peter, congratulations on this desition, it is a challenge to write about autism these days, but I don't doubt that with your knowlewdge and the invaluable help of the readers form different parts of the world who write here, you will make a good book, a real contribution. Also, as creative advertiser, I share your creative sense of presenting the posts, and that will be a positive thing to add to the book.
    Good luck!
    Valentina

    ReplyDelete
  2. Hi Peter, and community. First, as this my first post, I wanted to say a HUGE thank you to Peter for this blog. I'm the father of an amazing 4 year old daughter diagnosed with ASD just over a month ago, and I have found this blog, and the community who contribute via comments to be a tremendous source of information.

    To the question of treating or not treating our loved ones based on logic and the latest scientific literature, I for one can't imagine knowing that something may help improve my little girl and not doing something about it because my doctor can't write a prescription for it. I would suspect that most who read this blog share this perspective. The fact is, we can't wait until our kids are old before the science can be translated to prescription meds (that's how I feel anyway). The sooner we can help them improve, the more likely the improvements will occur and last.

    Best of luck on the book Peter! If it's of as high a quality as this blog, you'll have a lot of readers.

    AJ (from the frozen Canadian north!)

    P.S. Peter, as I have been doing a lot of research, where can I post questions / relevant findings from my research that may be helpful? I don't know the etiquette as I'm new to this :-)

    ReplyDelete
    Replies
    1. AJ, you can leave you findings either on he most recent post or an any post that is relevant to your subject.

      Delete
    2. HI AJ! Fellow BC Canadian here too with my daughter who is 4 diagnosed this year. I have also found this blog to be excellent and have already implemented many of the shares from Peter's blog, some with success some not so much (no matter what i do i cannot get PharmaNAC into her so far or Broccoli sprouts). Peter- looking forward to reading the book once you have it published.

      Delete
  3. Best of luck Peter.

    I think some sort of protocol may be interesting given the various ASD sub-types and interventions that have a degree of scientific backing and clear, reversible impacts with little risk.

    Thinking on the GABA dysfunction, the simplest of these for this would appear to be getting a clonazepam prescription for anxiety (present in all ASD, so no major hoops to jump through vs bumetanide).

    No impact on this under controlled settings, ramping up and down would indicate a different dysfunction, maybe reductive stress, maybe mitochondrial dysfunction etc.. Be interesting to see the decision tree.

    Also, have you ever thought of having a forum to make comments easier to track?

    ReplyDelete
  4. Peter,
    Looking forward to your book. All the best.

    ReplyDelete
  5. Well you definitely already have enough stuff on this blog to make a book or two. I do think that worrying about loading the book with too much science is something you should not concern yourself with because there are probably more books written by parents about "curing" their child's autism with pseudoscientific methods (Jenny McCarthy for example) than people who have actually read said books. At least your book will have a clear rationalization for why you choose a particular therapy and why you ignore the many others. You need to do this to separate yourself from the mountains of other books written by parents or doctors that generalize incessantly while not offering much to parents in our situation other than promises of hope with appeals of authority from random people with titles to their name.

    I would also not expect a lot of people to read the book, at least not initially. A mother of one of my daughters's friends at school self-publishes young adult novels and actually did reasonably well with one of her books (sold in the thousands I believe), but pretty much all the rest of her books have been a dud. It is just really hard to be financially successful with book-writing.

    That being said, worry less about how mainstream you think your audience should be and just worry about doing a good job in being accurate, correct, and providing parents like us, especially those new to an autism diagnosis the no-nonsense truth as you see it and the scientific rationalization for your opinions. There are of course authors in this space who shroud weak arguments in mountains of citations and lots of generalizations about topics they only superficially understand and are more importantly not relevant to their arguments, but I don't think you have that problem, at least never on this blog.

    Just imagine yourself shortly after getting an autism diagnosis for your son then and write a book for the "you" of 5 years ago. I think you would be surprised how many of the "yous" of 5 years ago exist today and who would are looking for honest autism analysis and potential therapies even if the simple truth happens to be that there are no easy answers in making things better for every person with and autism diagnosis.

    ReplyDelete
    Replies
    1. Tyler, there certainly are a lot of books out there.

      Only when you have found a therapy that really is so effective that everyone can see it, are most people going to invest time and effort to go through the science. I never expected to have to dig so deep, and to realize that almost nobody, including paid researchers, is doing this.

      I do not expect a best-seller, most books sell less than 2,000 copies, but by rereading my old posts I do find ideas that I have not yet developed, which by itself makes it worth the effort.

      Delete
  6. Well here might be some more low-hanging fruit to take a critical look at:

    Press Release:

    https://www.sciencedaily.com/releases/2016/12/161212133654.htm

    Paper:

    http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.4252.html

    This research is on childhood leukemia which you covered recently with respect to childhood leukemia's link to autism and other ID here:

    https://epiphanyasd.blogspot.com/2016/11/leukemia-il-6-il-10-and-autism-flare-ups.html

    What the researchers found in multiple mouse models of childhood leukemia for the most common form (ALL) was that intermittent fasting in a 1 day feeding/1 day fasting cycle completely prevented the proliferation of B-ALL cells. When they investigated the mechanism of action, they found that leptin signaling seemed to be the culprit. Obesity/Diabetes/Prediabetes are all very strongly associated with dysregulated leptin signaling and excess leptin levels in the mother's bloodstream could lead to epigenetic dysregulation of leptin signaling in her baby. In fact a recent bit of research I came across a not too long ago explores this relationship:

    http://medicalxpress.com/news/2016-10-brain-receptor-link-obese-mothers.html

    What this research showed is that excessive leptin exposure in utero led the offspring to become hypersensitive to leptin later in life. Excessive leptin sensitivity seems to be one of the takeaways in ALL and even more excessive in AML which is why intermittent fasting sucessfully treated ALL while it was unsuccessful with AML.

    So the specific protocol that was successful was feeding/fasting in an alternating day cycle and given leptin's many links to obesity/diabetes/prediabetes risks with autism, this would be an avenue to explore in situations where the mother had excessive weight gain during pregnancy and/or comorbid issues with diabetes or prediabetes. This idea is not so crazy that I could maybe even try and push my local university to look into doing a small study on this or at least try and convince somebody to try and make therapeutic use of this research.

    ReplyDelete
    Replies
    1. Tyler, this also suggests the use of Janus kinase inhibitors. When leptin binds to leptin receptors JAK2 is activated which then triggers a whole cascade of inflammatory reactions.

      Tofacitinib is an inhibitor of JAK1 and JAK 3. It is used for arthritis and IBD.

      Ruxolitinib is a JAK1 and JAK2 inhibitor.

      So they should trial Ruxolitinib in acute lymphoblastic leukemia.

      Delete
    2. I have had this in my paper queue for a few weeks now:

      http://stke.sciencemag.org/content/9/453/ra109

      What this study found was that metformin and aspirin (salicylate specifically) acted as JAK inhibitors via the AMPK pathway.

      Interesting that missed that nugget you referenced.

      Of course metformin and aspirin do a whole lot of things in the body and chronic use in children is not something I know as to whether it would be OK or not, but it might be something to look into before considering some of the stronger stuff like ruxolitinib.

      Delete
    3. Tyler, metformin is interesting and I did mention it earlier in this blog. One medical reader of this blog tried it on her son. It did have a behavioral effect, which is the important point. In her son it had a negative effect, but as we know people can be hyper or hypo in all these pathways. So metformin should be investigated and might help some sub-types.

      I also think low dose aspirin, as given to older people with heart problems, might be a safe long term therapy for some autism. It is cheap and the side effects are well understood. You just need to check if it is tolerated and does it have a behavioral/cognitive effect.

      Delete
  7. Hi Peter and community, I just wanted to post what I think is some interesting research and would appreciate your feedback.

    In looking at the research, it appears that our ASD kids generally overexpress proinflammatory Il-6 and Il-8 (among other proinflammatory molecules), and underexpress anti-inflammatory Il-10 as per:

    https://www.ncbi.nlm.nih.gov/pubmed/24934179

    https://www.ncbi.nlm.nih.gov/pubmed/27730473

    So I started to look at what could decrease Il-6 and Il-8 levels, and what could increase Il-10 levels, and found that Black Cumin Seed Oil (Thymoquinone) appears to manage all of these at once (as well as decrease other proinflammatory cytokines / molecules noted in the research quoted above), as per:

    https://www.ncbi.nlm.nih.gov/pubmed/19059494

    https://www.ncbi.nlm.nih.gov/pubmed/24399465

    https://www.ncbi.nlm.nih.gov/pubmed/22450443

    Could Black Cumin Seed Oil be a useful addition?

    AJ

    ReplyDelete
    Replies
    1. AJ, thymoquinone does indeed have interesting effects. there are trials in humans showing the long term effect on type 2 diabetes.

      Nigella sativa Improves Glycemic Control and Ameliorates Oxidative Stress in Patients with Type 2 Diabetes Mellitus: Placebo Controlled Participant Blinded Clinical Trial

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4338020/

      The same researchers found that above 2g a day (of the powder) there was no extra benefit.

      So it is a cheap natural substance that has a measurable positive impact.

      There was a recent study in humans with arthritis:-

      Effects of Nigella sativa oil extract on inflammatory cytokine response and oxidative stress status in patients with rheumatoid arthritis: a randomized, double-blind, placebo-controlled clinical trial

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4884216/

      Conclusion:
      This study indicates that Nigella sativa could improve inflammation and reduce oxidative stress in patients with RA. It is suggested that Nigella sativa may be a beneficial adjunct therapy in this population of patients.

      So you would have sound basis to see if the oil or powder has a positive effect in autism.

      There are numerous natural substances where this logic applies. The latest one I came across is a flavonol called fisetin that is found in strawberries.

      Modifying cytokines is used by other parents, there are many ways ranging from NSAIDS like ibuprofen to L Reuteri probiotic bacteria.

      You need to note that cytokine expression, while disturbed in autism, is not the same in all autism. There is research from Paul Ashwood on this. So there is no one size fits all solution.

      Lots of DAN doctors use OTC supplements said to improve arthritis, they are many and varied.

      Delete
    2. Hi Peter, thanks very much for your response! I will try the Black Cumin Seed Oil, and had already ordered Fisetin based on my research and will let everyone know if we find any improvement with these two options.

      Your point about no one size fits all solution is a great one. It's a bit of trial and error until you find a combination that works for your child's combination of causes (e.g. genetic / epigenetic / other)

      AJ

      Delete
    3. Hi AJ and Peter, are you familiar with the fact that Nigella Sativa has quite strong calcium channel blockig properties, and is used to lower blood pressure.

      It appears to be able to inhibit mast cell histamine release' (at least in the GI tract): https://www.ncbi.nlm.nih.gov/pubmed/16240107

      It has been trialled for epilepsy in children with promising results.

      Even more interesting to me in the context of autism is that it both verapamil/nifediping AND nigella sativa have shown great promise for opiod dependence withdrawal (given the importance of both opiod system and calcium signalling in autism)

      " It has been proved in many in vitro studies that calcium channels/blockers
      modulate the opioid receptors or release of endogenous opiopeptins in one or other way ... (in a small human trial) it was observed that calcium channel blockers prevent the development of significant craving and prevent the relapse. There was an increased sense of well being, manifested as less anxiety, clear thoughts, more satisfying sleep (often without sedatives), and a greater desire and capacity to participate in social and sporting activities."
      http://ayubmed.edu.pk/JAMC/PAST/20-2/Sangi.pdf

      A good table of nigella studies with outcomes https://examine.com/supplements/nigella-sativa/

      Delete
    4. Hi Natasha,

      In the last link that you have provided, it's strange that they have printed a list of studies carried out on various beneficial effects of N.sativa but towards the end they summarise that any health benefit on humans is at best modest and not an excellent intervention. Or am I missing something here?

      Delete
    5. That is the standard formula 'conclusion' when the evidence is not sufficient (in health authority speak) - when the number of studies or the total numbers of humans of those studies are not sufficient to stamp a big seal of official approval, the final official verdict will be of 'modest effect' (which is tons better than 'inconclusive' or 'non-existent' evidence :)

      Delete
    6. Nat thanks for sharing ! I have been using nigella with my son for a couple of years now - also using verapamil very small dose and he is doing so well! I tried mirtazapine briefly but the negatives outweighed the only positive I saw with it (longer sleeps - which eventually stopped working for that) - so back to just verapamil as the only rx medicine I am using and he keeps improving! perhaps it is the nigella combo?

      Delete
  8. Hi Peter,

    You gotta cringe a little, singe a little and let your poor head hurt a little...but thats the glory of, thats the story of writing a book with love..
    And lots of good accessible science.

    All the best for your book..too many have a personal stake here and you do have lots of information that can be translated into actual therapeutic use, which is not easily available out there at least in the lucid and coherent and common sensical Peter style.

    Regards

    ReplyDelete
  9. You mention Richard Frye,I am sure you are aware Dr.Frye is a strong believer in extensive testing,metabolic,immune,and genetic,for all of his patients,and tailoring treatments accordingly.I am very much aware it is much harder to get such testing for someone with autism in the UK,than it is in the USA,but even so,I don't think anyone should begin any type of treatment program,without medical testing proving said treatment is medically necessary.Autism,and/or intellectual disability alone is not enough.

    That said,I believe the antivaccine crowd has given a great deal of stigma to any kind of treatment for autism.

    ReplyDelete
    Replies
    1. Roger, are you aware that Dr Frye and Dr Rossignol are prescribing your leucovorin (calcium folinate) to people whose test results from Iliad for folate receptor antibodies are negative? They are not feeling bound by their own test.

      All tests, even genetic tests are severely limited. They may indeed show you the route cause of your autism, but usually do not. This does not mean the case of autism is not treatable. It is just going to be harder.

      Delete
    2. Hi Peter, we were receptor FRA negative but still are trailing Leucovorin at 2 mg/kg, which would be 30 mg but our peds was ok with us going up to 40 mg. I was not sure if we were going to get a response but we are. Slightly more language, more awareness and less behaviours like throwing things around. Nothing spectacular but I'll take it, we are 4 weeks in and it may take longer to have a better benefit. Your recent post regarding leucovorin being an antioxidant made a lot of sense why it would benefit without the antibodies. After 12 weeks we will introduce butenamide or low dose sertaline, I am still trying to decide but leaning to butenamide.

      Delete
  10. Peter, I think your book will be an extraordinary one.
    It won't come as another autism "novel", but instead as a novel scientific approach with "sense and sensibility".

    ReplyDelete
  11. Peter, I wish you well in this endeavour. I'm confident you have the knowledge and the skill to pull it off.

    I would like to make a suggestion if I may: go heavy on the science.
    As a parent trying to do something more the most frequent (and hated) excuse I face is the old "there is no evidence" argument. Yes, there are plenty as you have shown... Your own blog writing voice seems a perfect balance all in all, just go with it into this new media...

    Best regards,

    Jane.

    ReplyDelete
    Replies
    1. Peter, I second Jane's suggestion. It has been a disappointment to me that other parents who have both seen the improvement in my child and have looked at your blog, choose to do nothing. They still want their doctor to do it for them. I think the reason for this is two fold, one, they find it difficult to keep up with the writing, and second, would like a doctor on board to understand and monitor. Unfortunately, I think very few doctors in the US do this, they don't even bother keeping up with current research unless it is forwarded to them through the AMA or their professional associations. If your book is heavy on the science, it might become something akin to a reference manual, and help more doctors practice translational medicine. Especially those that have a lot of autistic patients.

      Making things easy for parents to understand is, in my opinion, a worthless endeavor for you and the parents, as very few will act on any of it, and the few who do will need to read and educate themselves and would appreciate the scientific depth.

      I actually believe that your book, both content and marketing, should be geared towards a readership made up of medical practitioners. However difficult this might be, its worth the effort as this would be the best way to get more children treated.

      I have shared your blog and my experience with so many parents, to date there is one who is trying the potassium, and that's it.

      Delete
  12. Hello RG,

    Yes, not having a medical practitioner on board to monitor drug response is indeed a huge huge issue here. Having a list of drugs which might theoretically help my child is fine, but when even the seemingly, safest, bumetanide, leaves my son with odd behaviours, two months following cessation, I have to hit the pause button. If God forbid, I had to rush my son to emergency, which could have been a likelihood, given his horrible response to potassium, what would I tell the doctors. That there is some Peter guy, somewhere out there (in effect meaning anonymous) following whose advice I imported burinex from an online store somewhere in Taiwan and so on and so forth. This would surely make me look and rightly so, a bigger idiot than what I probably seem to you.

    No parent chooses to do nothing..castigating parents who choose to weigh the pros and cons is outright immature. I know you have the best intentions but all of us have our own natural leanings owing to our personal experiences.

    As for me, I do seriously intend to try pharmaceutical interventions but with 'sense and sensibility'.

    But for now, over to my kitchen cabinet for kalonji (Nigella sativa). What a coincidence, I had enquired about opiate pathway dysfunctions and just now Nat highlighted the potential of black cumin to have some potential there. Will report back about the tesponse.

    Warm regards


    And I agree it would be wonderful if
    Peter could come out with a manual for medical practitioners, though I doubt it would be put to use unless Peter happens to be a Professor or has enough case studies with successful outcome in his compilation.



    ReplyDelete
    Replies
    1. Kritika, lots of parents DO chose to do exactly nothing, and dress it up in 'I wouldn't change him/her for the world' and 'autism is just a different way of seeing the world, welcome to Holland'-type platitudes as a way of justification. I strongly suspect this to be simply a defense mechanism they resort to, being too scared of failure and too insecure to go against the grain of mainstream consensus.

      My guiding principle has always been to try imagine what I MYSELF would have liked my parents to do, or not do, were I in the same bad shape as my son. Would I have wished them to 'accept me as I was', or would I have silently begged them to pull all the stops in order to get me better. I believe this is something every parent should try and do, the most honest thing they can do, whatever the answer.

      I actually just wanted to add the following to your comment, but got carried away :) : the biggest and by far the scariest regression we saw here in 11+ plus years of biomedical interventions (incl. many prescription medicine trials) was due to a simple, natural, 'totally safe' over the counter supplement.

      Delete
    2. Hi Anonymous,

      I belong to a developing country but I have yet to come across a single parent who has made nothing to be the choice of his/her child's intervention. Parents are going all out with allopathy, homeopathy, acupressure, reiki, neurofeedback, auditory integration, DAN protocols and even stem cell transplant. Those with the means are sending samples to be tested abroad..they have pulled all the stops. Probably those in the West are simply lazy or apathetic. Attributing parents hesitation in adopting a specific therapeutic approach, be it pharmaceutical, nutraceutical, behavioural or psychological to fear of failure or herd mentality seems to me a product of childish imagination. In fact, passing too much judgement on others decision as to the intervention which others choose to adopt or not adopt, displays a lack of confidence in ones own choices.

      As far as the emotional plea of imagining what my child might be wanting me to do for him, let me think..when Jesus made me whole, who are you to poke a hole into me..or ma, leave me alone with the cookies and the mobile..
      or mother, release me, an intact person, from this dark prison of autism. See, there you go.

      Finally, if a safe OTC supplement can cause severe regression in a child, that does not mean drugs are a safer choice. It only means -'chemicals inside, handle with care'.


      That said, I feel Peters blog is a huge, enlightened, benevolent contribution..so much information and the possibility of actual implementation. This must be tough.

      So, Peter, a big grateful thanks. I am sure, one of your suggested treatment will work on my son too.

      Delete
    3. Kritika, I would appreciate it if you could refrain from the insults.

      If I was castigating anybody, it was as much the doctors as the parents. There are plenty of parents out there who choose to do nothing. I have no idea why you would identify with them.

      Delete
    4. Hi RG,

      I sincerely apologise if what I expressed came out to look like an insult. I have nothing but great respect for you and you will find solid evidence for it in every communication I have addressed to you. The amount of hard work that you have done with your daughter, intelligently selecting the interventions and best of all you are actually seeing the results of medical treatment.

      As far as identifying myself with anyone is concerned, probably an absence of strong personal identity makes me identify myself a little with everyone, even the drooling twelve year old autistic child.

      RG, you are an inspiration to many and a personal role model to me. I can go on but only end up embarrassing you. Please forgive me for what can best be called immaturity, as humiliating anybody, least of all you, was not my intention. What I have to really learn to refrain from is the habit of posting frivolous comments.

      Warm regards and wishes and tons of apologies

      From 'despicable me'

      Delete
    5. The comments on here are starting to get so judgemental. Nobody does nothing. Everybody tries to help their kid. Just because it's not the same as what you would have done, isn't any of your business frankly. And FYI, disparaging Welcome to Holland, which has brought comfort and beauty to so many, is unhelpful.
      Nina

      Delete
  13. Thanks for the comments.

    It is a pity that more people do not want to treat their case of autism, or they want to treat it, but not with drugs.

    People, understandably, want their mainstream doctor to treat autism. It is so complicated that this is not going to happen anytime soon.

    Most people who do currently treat other people's kids with autism are rather weak on the science and then this make the whole idea of treating autism look like quackery.

    So the logical target for the book is open-minded parents, including doctors who have a child with autism.

    As Tyler pointed out there is enough material in this blog for two books, but it would be a huge job to read this blog from start to finish. A book is easy to flip through and then if you want lots of science links, you can just search on the blog on that subject. You cannot really cut and paste from scientific papers they way I do in my blog.

    The blog has had 700,000 page views, but I think only a handful of people have taken full advantage i.e. using drugs as well as supplements.

    For me the blog is a case of enlightened self-interest.

    ReplyDelete
    Replies
    1. Peter,

      Excuse me, but what exactly does enlightener self interest mean? I am Indian so a little weak on the English front.

      Thanks

      Delete
    2. It means that by helping others you also help yourself.

      So by writing this blog and sharing what I have learnt, it does hopefully help some other people, but it also helps me, because I also end up learning more.

      Delete
    3. Haha, I actually did read your blog from start to finish about a year or two ago (can't remember exact date).

      Delete
  14. I agree with every single sentence Kritika typed. It shouldn't be hard to see that most people are more comfortable trying something for their child that has the clinical research behind it as opposed to just going purely with the "science". Is there scientific evidence that combining all of these drugs, albeit low doses, and giving to your child with a fragile nervous system, long term, is safe? Like Kritika's experience with bumetadine - and my son's experience with an antibiotic that the science said would treat his infection, yet caused horrible side effect and I'm sure triggered his mast cell issues. 700k page views - I'd be willing to bet a lot more have tried some of your ideas Peter but never comment here.

    ReplyDelete
    Replies
    1. Tanya, it is almost exactly four years since starting this novel drug therapy. Today I saw my son’s end of term report, it has As, Bs and Cs, but it is the same report as his classmates, based on sitting the same tests; apparently he is very interested in Excel spreadsheets . Five years ago we needed a special school report with things like can he change his shoes by himself, or does he need help and instead of Excel, he could not even master the concept of bigger and smaller in terms of basic maths (is 7 bigger than 5? ). Medical side effects, none.

      This does not mean it will work for everyone.

      Delete
    2. that is an excellent report! My son is a bit older, and in time, I came to realize I had to stop gauging success of treatments for him just by academic gains - when he learned to type he could easily keep up with academics - but the other glaring issues remained. I didn't mean at all to infer that you are being reckless by giving all these low dose medicines at the same time - just sharing a viewpoint that for many who have undesirable effects from medicines, and have kids who can't adequately explain how a certain medicine might make them feel, it is very daunting thing to start. As for the people who do nothing medically either supplement or drug wise - I don't happen to know any personally. They must have a different "autism" reality that what we experience. That is another problem too with treating it - the label is too broad, needs to be codified in some way, a label that would be useful - a proper diagnosis.

      Delete

Post a comment