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Wednesday, 13 March 2013

Nom de guerre, Mon frère - Manchopathy


Today’s post had better be a quick one.  The desk research in the background is getting complicated and I have just ordered a 900 page book on Human Physiology, so as not to spout complete nonsense.  Worse still, a couple of days ago, I received in the mail, a big brown envelope from Tokyo with a juicy report on the use of Ceredist, a TRH analog.  It is 20 pages long, and the bad news is that 18 pages are in Japanese.  The good news is that I had expected all 20 pages to be in Japanese.

To business.   You are slowly being introduced to the cast members of this blog.

The star of course is “Monty”, aged 9.

His supposedly “typical” big brother, aged 12, is going to be called “Ted”.

Head of Applied Research, part-time biker and Speech Therapist will be called Dule (“Doolay”)

Last week I decided that it was time for some good old fashioned primary research, to test a hypothesis that I had formulated.  This is what we presented to the in-house ethics committee, for approval:-

1.    Many children with autism exhibit what appears as sensory overload.  On hearing a moderately loud sound, they will cover their ears, almost as if in pain.  Bright lights, darkness, certain smells, even touch can trigger similarly strong reactions.  Entire books have been written documenting these odd behaviours, but I never read an explanation for them.

2.    In my trawl through the literature, I noted that a disorder with surprisingly similar symptoms has been documented -   Hypokalemic sensory overstimulation

This disorder manifests itself as an overwhelming feeling of sensory stimulation.  But then disappears 20 minutes after a dose of oral potassium.  A related, but much more severe, disorder that causes temporary paralysis also exists -  Hypokalemic periodic paralysis

3.    The recommended daily amount of potassium for adults is 3,500mg.  A typical banana contains 400 mg of potassium. A dissolvable tablet of Potassium Citrate contains 500mg of potassium.  So 500mg is a safe dose to experiment with.


4.    A laboratory experiment is proposed using an MP3 file of a baby crying. Dule will first establish a baseline volume (VB) at which Monty will cover his ears. Monty will be sitting in a fixed position in the lab. This test will be repeated over a few days to see if VB varies.

 
5.    Then the subject will receive 500mg of oral potassium and wait for 20 minutes. The MP3 file will be played again while he is sitting in the identical test position. Dule will crank up the volume and note the new threshold volume (VT).

 
6.    The same test will be repeated with Ted and Dule as subjects.

 
Prior to providing Dule with the oral potassium solution, Peter suggested to Dule that he would perhaps prefer if the test did not show up anything worthy of further investigation.  Since that would again drive Peter crazy, that no serious scientist had noticed this, done something about it and published their work.

Here is the raw data from the test:-
 

Volume * at which sound becomes disturbing
 
7-Mar-13
8-Mar-13
 
11-Mar-13
 
11-Mar-13
 
 
 
 
 
 
after K+
Monty
9
9
9
16
 
 
Ted
23
26
 
 
Dule
21
23
 
 
 
 
 
 
 
* sound level on digital display of Philips mini HiFi
room is about 20 m2, subjects were 2.5 m from HiFi unit

 
Discussion

As you see, Monty is far more sensitive to sound than both Ted and Dule.  Monty experiences a sharp increase in his capacity to cope with sound stimulation after drinking the potassium.  Ted and Dule show a small increase in capacity, that may be just down to measurement tolerance/error. (Dule was testing himself, after all)

Mon Dieu!  It looks like we have to do a serious follow on study with more subjects and some flashy equipment.  Worse still, now I have to be able to explain scientifically why this is happening !
 
The cause is related to something called VDCC (voltage dependent calcium channels) these are like little valves that open to let  Ca2+ ions in or out; they are misbehaving.   Recall that Bumetanide works in a similar way by triggering NKCC1 and NKCC2 (Sodium, Potassium, Chloride Cotransporters) to let in/out  Cl- ions.  The subject of misbehaving ion channels has already been given a fancy name by scientists, its Channelopathy.  Now I was wondering how I was going to explain my use of French in this post.  It's all about the English Channel or should I say la Manche, and so we'll call it Manchopathy.
 
 
 

9 comments:

  1. Funny, but serious and truthful.

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  2. I am going to read your blog from entry one when I get the time.. I am an individual who came across Dr Segals work and through reading it came to the conclusion that I had one of these channelopathies that Dr Segal describes in his work. I have Andersen Tawil syndrome and have had my diagnosis clinically diagnosed and am being treated via diet which I'm not great at large supplementation of potassium daily along with a medication to help hold my level in the high normal range.. I would love to talk to you about observations that I and other folks with this condition have made.So many family members with autism spectrum disorders disordered thinking along with some very serious medical issues ranging from gastrparesis to mitochondrial disorders.. symptoms of genetic disorders with out the genetic identifier being found you can visit my Andersen Tawil Pages on facebook if you would like to talk to me.. hormone problems too! Niece born euthyroid for example.. I truly feel you have hit the nail on the head with this one.. kcb

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    Replies
    1. Thanks for you comments.
      I wrote another post all about potassium,
      http://epiphanyasd.blogspot.com/2013/08/potassium-may-play-important-role-in.html
      and a brief follow up
      http://epiphanyasd.blogspot.com/2013/09/bumetanide-in-autism-potassium-and-dr.html
      What is odd is that you are the first person who has responded to me on this. It looks like most people who are ADHD or have ASD are likely affected and its really easy to make a trial at home.
      I thought early on in my blog investigation that channelopathies are behind many problems in autism, along with hormones being out of balance and also the oxidative stress/inflammation issue. In fact all of these issues are inter-related and self perpetuating.
      I also just wrote about central hypothyroidism, which you may be interested in:
      http://epiphanyasd.blogspot.com/2013/09/central-hypothyroidism-or-low-brain-d2.html

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  3. Dear Peter,

    I have found your blog today, and I also believe you are on the right track. I am autistic, and have reduced my level of sensory overload to almost nothing, yet, I still have to take care.

    I am also in the process of trying to get to a full understanding. It is great what you are doing for your son, because sensory overload can affect a person very negatively throughout one's life and if you can find a solution, it can benefit a lot of people.

    I discovered a strong link between the fact that magnesium keeps potassium inside the cells, where it is needed to discharge the cell's electrical charge. I am busy putting together a document to try to explain it all, it is quite complex, yet - you're onto 100% the right thing. Potassium in support with Magnesium. Hyper excitability of the cells, Hypoglycemic paralysis... that is what I think I experience - at different times in different parts of my body, including sometimes my brain. The body moves the potassium around so drastically that parts of the body gets paralyzed. But, when there's enough magnesium in the cells, it can keep more potassium inside the cells, which means the potassium doesn't have to be moved around so much. I have taken extreme care when upping the levels of potassium and magnesium, as you know one have to be careful.

    I have noticed only a hand-full of people who are thinking in this direction you are thinking in, but hopefully soon there will be a verifiable solution that could bring relief for sensory overload.

    Benjine

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    Replies
    1. Dear Benjine

      Thanks for your three comments. It is very interesting both that potassium/magnesium reduce sensory overload and that virtually nobody has noticed.

      Hopefully, as we talk more about it, others will follow us. I did note that some American doctors use Spironolactone to treat autism.
      http://www.ncbi.nlm.nih.gov/pubmed/17150311
      They claim success, but not because of potassium. Spironolactone is a potassium sparing diuretic, it reduces the loss of potassium from the body. I think they have found the right drug, but for the wrong reason.
      Maybe it is safer to reduce the loss of potassium, rather than to keep adding more ??

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  4. My hunch is there's nothing wrong with the channels. Potassium is one of those minerals that gets burnt through a lot faster when you have a high body toxin burden and impaired detoxification pathways... and the Autism Research Institute has not yet tested an autistic in the thousands that they've supported who did not have both impaired detox and high body toxin load. I expect that if you did a challenge test, Monty would scare you with what shows up in his blood and urine, in which concentrations. My hope is that at this point, you would optimize his digestive function so a supported detox would actually have someplace to safely dump things, and then help him remove toxins so he stopped burning through K+ (and other critical nutrients) so quickly.

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    Replies
    1. Thanks Jackie for your comment and ideas.

      The thing is that Monty and the other people who have the same condition, that replied to my posts on potassium, do not have low blood potassium.

      The "toxins" are not making him burn through K+.

      He has high K+, but when he has just a little more K+ his brain behaves slightly differently.

      If the Autism Research Institute did a very cheap piece of research, and repeated the same experiment I did, they too might be surprised. I supose, with a fancy name like that, they must do research ??

      Defective calcium channels are found in many diseases like Parkinson's Disease, Spinocerabellar Ataxia, Timothy Syndrome and quite possibly other phenotypes of autism.

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  5. Also, I read this article today, and I tried taking a couple potassium supplements. I think it really helped. Thanks for the information.

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  6. I was thinking along the same lines, approaching from another angle. Growing up on a Pedigree Seed Farm, I was aware of the minerals and vitamins in wheat. I was recently reminded of the function of Potassium in nerve function, and wondered if there was a connection with autism. White flour has no minerals in it, and if most of our society is vastly missing their potassium intake through whole wheat products, or are eating vegetables grown in soils that have low potassium levels, or are not at all eating vegetables - then how are they to get potassium?

    Foods containing potassium include: almonds, artichokes, avocado, bananas, beet greens, broccoli, Brussel sprouts, kale, lentils, lima beans, oranges, papaya, pinto beans, prunes, raisins, spinach, sunflower seeds, Swiss chard, tomatoes, wheat germ, winter squash, and yams. How many of these do your children eat?

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