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Tuesday, 13 September 2016

Tackling autism, child by child







Today’s post is to highlight an unusually well informed article about autism, pointed out to me by our reader Natasa.  

It is about how autism is treated by Dr Richard Frye at Arkansas Children's Hospital.  If you read the article, you may wonder why your pediatrician is unaware of these methods.


Click the link below to read the article.










20 comments:

  1. Yes, Dr. Frye is a brilliant autism researcher. He is also a MAPS doctor (the organization formerly called DAN! that has been widely maligned, even on this blog), and he participates in the Autism One conference, which many believe espouses nothing but "quackery". The biomedical movement really does have a lot to offer. There are definitely snake oil salesmen out there, but there are also cutting edge scientists and practitioners, like Dr. Frye, who are at the forefront of finding real treatments for our kids.

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    1. Dr Frye is clearly very knowledgeable, but many people calling themselves DAN doctors are not. You just have to read what they have to say on the subject, some even write books. Some of these people charge huge amounts of money for very little and have one or two pet therapies which they try on everyone.

      Dr Frye is the exception and it is a pity there are not more like him and then people would not be waiting two years to see him.

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    2. Hello Peter,

      It becomes very difficult for parents to take strong positions especially when our kids show improvements we do not what to attribute to..so we do not dismiss the behavioural therapies, ot, st, alternative therapies ..even prayers and gods grace.

      About two years back when my son got the diagnosis, I was quite hopeful about mainstream medical treatments pulling my son out of his 'autism'. Bumetanide and to a lesser degree suramin were being touted as drugs which would revolutionise autism treatment. Well, either mainstream medical community is not ernest enough or simply not sufficiently clever to offer anything to most of us.. ordinary parents running short of time, energy and finances to carry out our own mini research.

      I have been consulting a homeopath, not the money minting one, but a respectable, well known traditional doctor. I noticed improvements, some dramatic others minor. A fortnight back he started my son on Apis mellifica for an itchy nose and skin infection. When I looked up, I found the remedy is not only an anti allergen but also s diuretic. And believe me, some pretty decent developments in terms of receptive speech, connectedness and awareness..he has started noticing the clothes we wear when going out, checking out our closets and yesterday put on pants on his own and pulled me towards the door as he wanted to go out and we do not take him out in shorts because of mosquitoe menace. On the downside he is full of unbound energy, elated but also very hyperexcited as if everything all his nerves are charged up. It could very well be the weather causing the change..I do not know.

      And I not sure if there is a clear distinction between a DAN or biomedical practitioner and a mainstream one. Here in India, so called biomedical (what does this term mean btw) practitioners are mainstream doctors, some attached to prestigious hospitals, but doling out therapies indiscriminately and inside information very disappointingly, provides an incriminating picture of many of these practitioners.





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  2. Excellent article.

    The mention of a selective carb diet reminded me of something that has been bugging me, has anyone seen any good studies or theories on *why* food selectivity is so much higher in ASD?

    Here is a meta-analysis showing the higher incidence: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601920/ but aside from maybe sensory issues not sure why there is so much pickiness in eating.

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    1. Yes, an important question, the answer to which would open doors to more targeted interventions. The easiest or laziest answer would be that it has something to do with (bad) gut bacteria 'demanding' their food in form of carbs.

      Another possibility is that this is related to blood sugar issues, and these children are somehow self-regulating their glucose levels by eating high-carb diets.

      Someone mentioned the other day the possibility that the food selectivity could be linked to (impaired) digestion and processing/metabolism of fats and proteins.

      Then of course it could be something else entirely or a combination of above. I agree that the sensory sensitivity by itself wouldn't be good enough an explanation.

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  3. Hey Peter, Here is a short video from Duke that talks about the Cord blood trial (around 9 minutes in). https://www.youtube.com/watch?v=WuxmyK_LwnA. It looks like the first phase had the same results as the Chez study.

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  4. In the article they discuss folinic acid in high amounts. Has anyone tried this and had success?
    --Christine

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  5. A little bit of a tangent to this discussion but there is a new component to an app (Ipad) called the NIH Toolbox App (the component is called NIH-TCB) which is a cognitive battery for those with intellectual disabilities:

    http://jneurodevdisorders.biomedcentral.com/articles/10.1186/s11689-016-9167-4

    Here is the link to the documentation and tutorials:

    http://www.nihtoolbox.org/Resources/NIHToolboxiPadapp/Pages/default.aspx

    Here is the Apple link to the actual app:

    https://itunes.apple.com/us/app/nih-toolbox/id1002228307?mt=8

    Running assessments with the app is free, but generating reports and all that other stuff will run you $500 (not recommended unless you are a professional). The TCB was created due to a dearth of available methods out there to do cognitive tests of those with intellectual disabilities.

    This app (I have not gone through it yet, just finished the paper and downloaded it) could be very useful in providing objective metrics for whether X,Y, or Z interventions are helping or not (at least with regards to general cognition).

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  6. I found Dr Martha Herbert's book " the autism revolution" quite useful to differentiate between therapies that have been used safely in top US medical colleges and the ones that are not known to be so effective. Dr Martha Herbert heads an autism unit at mass general hospital at Harvard medical college. Advice is excellent. Lots of opinion are similar to those expressed on this blog.
    What I find really shocking is that simple supplements that significantly improve quality of life of kids and parents are not prescribed by doctors.

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    1. It is very hard to draw the line between what therapies are safe and effective and those that are not. The easiest option is to say nothing is proven to work, so do nothing. Once you start questioning this you have to set the boundaries yourself. Boundaries are indeed needed.

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  7. Hi Peter,

    I plan to try diuretic for my son. He is 3,3 years old but still non verbal. No problem in his sleeping pattern though. He usually nap for 3 hours at afternoon and sleep from 9-5 at night.

    The thing is that bumetanide is not available here. So I plan to try with Diamox. Is it okay? How long can I see the effect with Diamox?

    Best regards,

    Abdul

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    1. Abdul, bumetanide is the drug with the research to support its use, so I would definitely try that one, even if you have to buy it elsewhere.

      I proposed that diamox should also help and there are anecdotes that it does. In my son diamox appeared to cause reflux, while bumetanide has no negative effects after nearly four years of use.

      Most people are using diamox with bumetanide. Bumetanide takes 2+ weeks to show effect. For diamox by itself I do not know how long it would take to show effect.

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  8. Hello Peter,

    I assessed my son objectively and he does seem to be high functining. At least in certain domains. His therapist is quite optimistic and feels that my son might catch up in a few years time and wants him to keep on practising what his NT peers are doing.

    I am sorry but I was trying to deconstruct the mind block that I can't seem to overcome regarding pharmacological support especially when it comes to drugs like diamox or baclofen or even clonazepam.


    1. I am still doubtful how I will discriminate between actual and placebo effect as my sons autistic and cognitive behaviour is so unstatic.



    2. My son, although he can communicate localised discomfort by pointing, generalized effects like nausea, cramps or dizziness will be difficult to identify and hence control

    3. Drugs like baclofen stop working after sometime as tolerance builds up and associated with severe withdrawal symptoms when weening off. Pulsing, which is recommended (as also for diamox which EM? suggested for diamox) then in itself becomes a problematic issue.

    4. If I exhaust all the drug options in say two years time and everything stops working due to tolerance or feedbacks which everybody seems to be experiencing, I would be left with no further alternatives. Do you think some of the meds you suggested will raise my son's developmrntal baseline to a level where not much further intervention will.be required. I do not think do that this is what anybody feels though..requirement for intervention will be lifelong.

    Do you have any thoughts on this.

    Feeling embarrassed for loading you with queries regarding decisions which probably should have been my prerogative but your opinions do count.


    I really wish and I am sure all readers of this blog do that you were a paediatrician who our kids were blessed with.

    Regards

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    1. Kritika, Bumetanide appears to have no long term tolerance issue. The UK paediatrician who told me about baclofen for Asperger's claimed not to have seen any tolerance issues at her dosage. Low dose clonazepam could be called tiny dose clonazepam, because the dose is so small, some readers have been using it for 2+ years.

      It is easy to avoid the placebo effect if you do not tell teachers/therapists about your trial. If there are big changes these people will come and tell you.

      I think all these drugs will have most effect if started very young. How long you take them for, nobody can tell you. People with severe autism may need them life long, some people with milder autism may not, since they can better develop coping strategies.

      First you have to see what actually works.

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    2. Peter,

      Have you done any research into dTMS?

      Seems like a promising future modality.

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    3. Andrew, if you are interested in TMS for autism best to contact Manuel Casanova. He also has a blog and if you write to him I expect he will reply.

      www.corticalchauvinism.com

      He is a neurologist with a grandson who has autism.

      Given how many hundreds of different dysfunctions can lead to autism I focus on therapies that target very specific molecular dysfunctions. I do not know if TMS works, it would be great if it did.

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    4. I know Manuel! I email with him occasionally.

      In his latest email, he lamented the fact that the FDA is preventing him and his fellow researchers from initiating a large-scale, double-blind clinical trial. Seems a shame, given how promising some of the smaller studies have been.

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  9. I read this post a day or two after it was first posted,and I wasn't sure I was going to respond at first,because of all the comments here that are not related either to the article itself or to Dr. Frye's work.It all looks like a lot of white noise to me.These comments are like what I see from so many autism parents around the web.Parents desperately grasping at straws,trying one therapy after another,to find what works,with no idea what they are treating beyond the behavioural symptoms of autism.Going from one antianxiety drug,antipsychotic,or antiepileptic after another is no better than parents who go from chelation to MMS,because they believe autism is due to vaccines,and the imagined "metals" and "toxins" therein.I don't blame the parents,but I do blame the doctors that prescribe drugs like clonzepam baclofen,and even risperidone,with no idea what they are treating.I see Dr. Frye,and I know this isn't what his work is about.

    Dr. Frye believes in tests,tests,and more tests,until the root causes are found.A practice that should be universal,but sadly is not.And it isn't because most doctors are willfully ignorant of the metabolic and genetic disorders Dr. Frye treats.We can all think of our own theories as to why this might be.

    Parents new to this stuff might want to start here for an overview.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073259/

    Christine,I was able to treat autism that was verbal,but very low functioning,with high doses of folinic acid,B12,and betaine.I started as an older adult,and it took about 3 1/2 years to become pretty much neurotypical,but faint traces of autism will always be there.There are many other families who reported similar results with their children in much shorter time.I know a couple of these families through Facebook.The older you are when you start treatment,or the more severe the autism is,the longer it takes.

    My autism maybe reversed,but I still have other serious medical issues.Some we are still trying to find treatments for.I have been on the treatment for folate and B12 problems since 2009.I was one of the early patients treated for CFD.I have high folate receptor autoantibodies,a recognized inborn error of folate metabolism,besides the FRAs,and mutations for what is either an extremely rare neurological disease,or an almost as rare cancer gene.Cancer genes also can cause syndromic autism without cancer.I suspect I am in the latter group.I am going back to Arkansas soon to figure out what is going on with these mutations.These genes were found through whole exome sequencing.Like Dr. Frye,I believe as many people with autism as possible need tohave whole exome or whole genome sequencing.

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  10. Hello Roger,

    I am a desperate parent with no idea what I am treating beyond the behavioural symptoms. The diagnosis of autism is based on a group of behaviours and it's treatment, even the medical lab work, in India is not covered under Medical insurance, even by the Swiss government, for whom my husband works as a scientist. Autism comes under the domain of mental health issues so I think you get an idea.

    So for us, improvement or deterioration in behaviour is the only indicator and expression of a therapy working or otherwise. My son is a physically healthy, thriving, active individual with good motor skills, lustrous hair and skin, healthy nails, diet and bowel movement. He has no allergies or seizures or rashes. No visible pathology. The only aberration apparent is the behaviour. So where do I start, read up symptoms of each and every possible dyafunction, correlate with my child and get the tests carried out when I am not even sure if someone can interpret the tests properly, especially when readings come up as normal but low normal or high normal which is often the case with autistic (using the term in absence of a better diagnosis) kids.
    And with no financial support.

    Till the time, the scope, meaning and intention of early intervention goes about a sea change and medical diagnosis and treatment is offered to each child presenting as autistic, or aspergers or even intellectually disabled, parents will go on creating 'white noise'.
    Sorry for this comment as it hardly adds any value to discussions on autism treatment and only seems to take up a lot of space. Will try a little more restraint in future.

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  11. Roger,
    Thank you for your response on folinic acid and the path you have taken in order to be at your best. I appreciate you sharing.
    Please understand (and I think you do) that as parents we have been left to figure much of this out on our own. I live in Chicago (the third largest city in the US). We have many excellent hospitals. There are scads of doctors and researchers who work on Autism and related disorders. Yet, I have never been guided in any way through the world of drugs, testing, supplements or therapies. I have done it all on my own -- always using restraint and thoughtfullness in anything I give to my son. Sometimes the symptoms of Autism can be so dangerous for the child and family such as years of not sleeping that I had to take a chance and try a drug like Clonidine as nothing else worked. An instance where I wasn't willing to take a risk is when my son's doctor recommended Risperadal as it seems to be standard protocol for kids with Autism and I declined. I looked at the risks and wasn't comfortable since my son isn't aggressive to himself or others and it didn't seem like a good fit.
    So, I guess I just want to echo what Kritika was saying in that we are all very thoughtful about how we approach the treatment options available. There isn't a road map and not everyone has access to clinicians like Dr. Frye. We are all trying hard to help our children reach THEIR potential, whatever that might be.
    --Christine

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