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Old 01-17-2011, 07:14 AM   #1
TheMercenary
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glatt, maybe they could get him to a university setting for treatment. At least there will be people there who have heard of this syndrome.

I hate any of the nasal flu preps, they are live attenuated vaccines.
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Old 01-17-2011, 07:39 AM   #2
xoxoxoBruce
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I'm having trouble with the basic concept. If his body is fighting one bug, and you introduce a different bug, the immune system can't multitask? Does the immune system fight different bugs in different ways? Is it a change in body chemistry that makes the kid nuts?
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Old 01-17-2011, 08:01 AM   #3
TheMercenary
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Quote:
Originally Posted by xoxoxoBruce View Post
I'm having trouble with the basic concept. If his body is fighting one bug, and you introduce a different bug, the immune system can't multitask?
It should.

Quote:
Does the immune system fight different bugs in different ways?
Absolutely.

Quote:
Is it a change in body chemistry that makes the kid nuts?
I have no idea in the case of this syndrome, this is the first I have ever heard of it.
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Old 01-17-2011, 08:25 AM   #4
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Quote:
Originally Posted by nimh
What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.
Good luck with that, it would appear that flumist is not associated with this. This disease has a "sudden onset" nature, which naturally causes parents to look for something they did in the last 24 hours that caused it. But correlation does not imply causality and researchers believe that strep is the cause and not some vaccination for something unrelated. "Data points" also lead us to confirmation bias.

A Google search to correlate the terms PANDAS and FluMist only turns up one result, a thread of concerned parents trying to decide what to do.
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Old 01-17-2011, 04:16 PM   #5
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Quote:
Originally Posted by xoxoxoBruce
I'm having trouble with the basic concept. If his body is fighting one bug, and you introduce a different bug, the immune system can't multitask? Does the immune system fight different bugs in different ways? Is it a change in body chemistry that makes the kid nuts?
It's not about the bug, it's about the adjuvants in the vaccine--the ingredients that deliberately throw your immune system into overdrive, to elicit the desired immune response to a bug that your body typically wouldn't bother with. The role of the tonsils in the body isn't exactly understood, though we know they produce antibodies in youth and generally stop by adulthood. Throw the tonsils into overdrive while there's also strep living in there, and the effect could in theory be an autoimmune disorder like PANDAS. The problem with the disorder is not actually the strep itself, but the antibodies the immune system is creating in reaction to the strep.

Quote:
Originally Posted by Undertoad
A Google search to correlate the terms PANDAS and FluMist only turns up one result, a thread of concerned parents trying to decide what to do.
Your search was too narrow, as it's not the FluMist in particular but the nature of vaccines overall. Google search PANDAS caused by vaccine or vaccination and the results get much larger.

Quote:
Originally Posted by glatt
Refresh my memory, what did the removal of tonsils do for your kid(s)? Did it help a lot?
Minifob was diagnosed with PANDAS (by an Ear-Nose-Throat specialist, not by our autism doctors, though it very often goes hand-in-hand with autism diagnoses, just like celiac, food allergies, and most other autoimmune diseases. Some cases of autism actually appear to be nothing but PANDAS to begin with, triggered at an early enough age to severely affect brain development.)

Once the disorder is triggered, it's going to be a lifelong condition to manage. Every single time the kid is exposed to strep, there will be neurological problems. The tonsils and adenoids are very, very susceptible to strep infections. If you remove them, the strep has nowhere to live except a thin sheen of skin on the surface of the back of the throat, which is easier to defeat (always with antibiotics, from now on.) Some hardier species of strep can also live in the intestines--but again, nothing nearly as vivacious as the kind of colony that can set up shop in the tonsils/adenoids without even trying. Removing them now will A.) get rid of the majority of the current infection in one fell swoop, and B.) make future infections less frequent, and less severe.

Edit to add: Also, as I learned last month, pink eye can be caused by a strep infection of the eye (though it can also be other bacteria too, like staph.)

We unfortunately ended up removing his adenoids and his tonsils in separate surgeries, but after both, he was a completely different kid. He regressed again after the adenoid surgery because a new round of strep infected his tonsils, and antibiotics were only minimally effective by then. After the tonsils came out, his teacher at school said "something just clicked," and he has had huge jumps in social, verbal, and cognitive skills. Of course, his rampant OCD symptoms have also disappeared.

Your friends should look into the book Saving Sammy, though they've probably heard of it already if they've gotten far enough in the process to locate a doctor who diagnoses and treats PANDAS. There's also a very active PANDAS Yahoo group.

Last edited by Clodfobble; 01-17-2011 at 04:27 PM.
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Old 01-17-2011, 08:50 PM   #6
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Quote:
Originally Posted by Clodfobble View Post
Your friends should look into the book Saving Sammy, though they've probably heard of it already if they've gotten far enough in the process to locate a doctor who diagnoses and treats PANDAS. There's also a very active PANDAS Yahoo group.
Thank you for all your advice, Clodfobble. I'm going to pass these tips along. I think it's huge that they already did so much research themselves and found a doctor. But I guess having a kid ask to die will do that to a parent.
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Old 05-23-2013, 08:03 AM   #7
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Jenny McCarthy, where are you now ?

This year, the U.K. has had more than 1,200 cases of measles,
after a record number of nearly 2,000 cases last year.
The country once recorded only several dozen cases every year.
It now ranks second in Europe, behind only Romania.


Public Health England
3/13
Quote:
The age distribution of the cases in the first quarter of 2013 shows a peak in the 10-14 year old age group
with an apparent shift in age, when compared to the previous 4 years <snip>

NY Times
By THE EDITORIAL BOARD
May 22, 2013
Aftermath of an Unfounded Vaccine Scare
Quote:
Britain is experiencing serious outbreaks of measles that look to be
a delayed consequence of a failure to vaccinate infants and young children more than a decade ago.
A prime cause of that failure was ill-founded fears among parents that
a widely used vaccine to combat measles, mumps and rubella might cause autism.
Because they shunned the vaccine, their children, now in their teens, are suffering the consequences.

Those fears had been fanned by Dr. Andrew Wakefield,
a British researcher, who claimed to have found a link between the vaccine,
gastrointestinal problems found in many autistic children and autism itself.
His work was subsequently discredited, and the BMJ, a British medical journal,
concluded that flaws in his scientific study were not honest mistakes but an “elaborate fraud.”

Even so, he has stalwart defenders who ignore the overwhelming consensus
of vaccine and infectious disease experts that the vaccine is safe and effective
and not a cause of autism.

It has a proven record of safety when given to hundreds of millions of people around the world.
<snip>
The most serious outbreaks this year have been in Wales,
where there are also signs that mumps may be increasing.

A vaccination campaign aimed mostly at young people ages 10 to 16
is now trying to fill a gap that should never have occurred.<snip>
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Old 01-17-2011, 04:42 PM   #8
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PANDAS resource network FAQ:

Quote:
Q:I'm concerned about vaccinations and whether they cause of PANDAS
A: The research at this point indicates that the disease is a response to Group A Beta-Hemolytic Streptococcus and not a result of vaccines.

Q:Will a vaccine trigger an exacerbation?
A: Possibly. The theory is that PANDAS children already have a weakened blood brain barrier and when a vaccine recruits T-cells, there is inflammation that can further breach the blood brain barrier. The vaccine acts like a mini version of the illness (bacterial or viral). While the immune system kills off the weakened bacteria/virus in the vaccine, the body still has an immune response and still produces localized inflammation allowing antibodies or B-cells to cross the blood-brain barrier. This is a very controversial area and talking with an immunologist with experience with MS, ARF or Sydenham Chorea is probably the best recommendation here.

Q: Does PANDAS cause permanent brain injury?
A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.
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Old 01-17-2011, 04:46 PM   #9
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Quote:
Q:Will a vaccine trigger an exacerbation?
A: Possibly.
Just wanted to be clear here... you're cool with this assessment of the current research?
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Old 01-17-2011, 04:47 PM   #10
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As long as you understand the difference between "cause" and "trigger".
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Old 01-17-2011, 05:01 PM   #11
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Originally Posted by Clodfobble, 05-18-2009
Yes, because I also think an honest examination would force them to conclude that the current vaccination schedule is too aggressive, and that certain specific vaccinations carry extra risks and should be performed with even more caution; and in the long term view, I think it would also open the research path of trying to identify those kids who are genetically at risk.
Quote:
Originally Posted by Clodfobble, 05-19-2009
There are many factors involved, I absolutely agree. There is usually no one cause of autism even in a specific individual, let alone across all cases.
Quote:
Originally Posted by Clodfobble, 5-21-2009
It is, in fact, demonstrably genetic. Siblings of autistic children have a 2-8% chance of being autistic, somewhere between 50 to 200 times the rate of the general population. But the debate rages over whether it is purely genetic, or whether it is the susceptibility which is genetic, and that without the environmental triggers it would remain dormant, so to speak. (As a comparison, diabetes is also known to be genetic, but the rate of diabetes is much higher today than it used to be because of environmental triggers setting off the disease, like poor diet and lack of exercise.) If one acknowledges that the actual rate of autism is rising, mathematically speaking they must acknowledge that there is an environmental factor, because there is no such thing as a genetic epidemic. This is why many institutions are desperate to prove there are not actually more cases of autism now than there used to be, because if there are, it means there's a cause.
That's just in the first four days of this thread. Do you really want me to systematically quote myself from the beginning? It is you who has consistently denied the possibility of a vaccine either triggering, or exacerbating, an existing predisposition or condition.
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Old 01-17-2011, 07:07 PM   #12
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OK let's use an example.

In an avalanche, the cause is the slow buildup of unstable snow on a height, and the trigger is a relatively small event - the falling of a branch, the schuss of a skier - that finally brings all that instability to bear, and the event happens.

Quote:
It is you who has consistently denied the possibility
That wasn't what we were talking about, but fine. I don't deny anything. I merely ask for proof of a causal relationship. I don't deny, I challenge. They are different. I can give you more examples if you require.
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Old 01-17-2011, 07:22 PM   #13
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Originally Posted by Undertoad
In an avalanche, the cause is the slow buildup of unstable snow on a height, and the trigger is a relatively small event - the falling of a branch, the schuss of a skier - that finally brings all that instability to bear, and the event happens.
Absolutely. And when it has been determined that a particular mountain has a large buildup of snow, then the conditions are declared unsafe... and they don't allow skiers on that mountain, because they might trigger the avalanche.

Just because the trigger is small, or a common occurrence on all the other mountains that don't have a buildup of snow, doesn't mean the avalanche is inevitable. We can still prevent it in most cases.

Last edited by Clodfobble; 01-17-2011 at 07:30 PM. Reason: nevermind, let's just stick to what we agree on.
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Old 01-17-2011, 08:47 PM   #14
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Old 05-23-2013, 01:12 PM   #15
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How incredible would it be, if we could live in a utopia where no one ever got sick with anything? This is surely something we should strive for.
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