Look It Up

By Cathy Jameson

Something’s been bothering me for a long time now.  It shouldn’t because many of us would be lost without it.  Parents get ripped a new one for using it.  But, lots of us, not just autism parents, continue to rely on it.  What is this thing I’m talking about? 

The Internet. 

Now, before some of you who lurk on this page have the chance to roll your eyes, please consider how much you yourself use the internet. 

Do you shop online? 

Do you download music for your iPod or add books to your Kindle? 

Do you order stamps, check on deliveries or schedule appointments on the Internet? 

Do you do your banking or pay your bills with secure web browsers? 

Do you communicate on message boards or Twitter? 

Are your circle of friends on Facebook, Google+ or Pinterest? 

How many of you keep up with your home team checking the latest stats on the team website?  Who’s made financial gains after buying stocks via an e-trading company?  What about your taxes?  Did you e-file last year or get a direct deposit of your return to your savings account?  Have you ever checked in for travel on an airline’s site?  Isn’t it amazing in that with just one click of the mouse a getaway trip is confirmed and a jet awaits you at the airport? 

The Internet is host to anything and really, just about everything.  Just about everything can now be blogged, posted, shared and pinned.  Both good news and bad news can be found while cruising the net—from joyous life moments like birth announcements, engagements and holiday adventures to creating memorial pages or charitable trusts for a lost family member.  I think it goes without saying, and that many will agree, that the Internet has a great many uses and makes life a lot easier, not just for a few, but for millions across the globe.  So, why is it okay for some people to use the Internet to research or promote their thoughts and agendas, but it’s perceived as practically sinful when others, like parents of vaccine-injured children, use it for the same purpose?

Websites provide answers.  They list information that would be incredibly difficult to find elsewhere.  From mindless entertainment to state-of-the-art advancements, websites reveal a multitude of facts, data, medical breakthroughs and more.   It truly is incredible.  Within nanoseconds what can be looked up on the internet has helped someone make a life-saving decision or given peace of mind.  Who doesn’t appreciate that kind of immediate information and gratification? 

I know that some people don’t appreciate what’s accessible on the web, especially when an autism parent finds it and begins to cite it.  Those answers, that research, these numbers, that cover up.  The information is there as plain as day, but we’re told how foolish we are for looking it.  It’s as if we’ve stumbled upon a national secret.   Heaven forbid parents take that information and think it beneficial in their search for help!  And, they better not share that information with anyone, especially with that doctor who won’t admit he’s got less knowledge than that answer-wielding parent!

For a parent to admit they might have looked something up “online” while face-to-face in an exam room with their child’s medical provider—oh, boy.  You would have thought it criminal.  Why, that kind of behavior should be outlawed!  Parents are told how mistaken they are and how wrong it is to cross that line.  Parents being read the riot act for being proactive?  That can’t happen, can it?  Yes, it does.  I should know.  I was that parent.  I took the time to do a little bit of research.  To make simple statements about Ronan’s health that were backed by science.  To say, “Hey, doc.  If this, then that, right?”  Wrong!  What follows that kind of input?  The hairy eyeball and a condescending how-dare-you look.  To top it off, I got a lecture about how it’s not my place to do that kind of research for my child.  Hrmpf! 

Several incidents within a week’s time had me reeling about how some medical people guard the Internet as if it was their own.  Oh, that look of disdain they threw toward me when that word came out of my mouth.  Give me a break!  Not only do they sound ridiculous, they looked ridiculous as they tried to dismiss my well thought out, educationally-minded, researched contribution about my son’s issues.  It wasn’t rubbish.  It most certainly wasn’t some back alley mumbo jumbo.  What I shared was information reported on credible sites and in online medical journals that they also have access to.  I spent as much concentration, time and detail to what I discovered—which would be the same effort that they or any research assistant would have spent on the subject.  The subject?  My son.  The kid standing in front of them.  The one with the five-inch thick medical record.  The child they promised to help.  But won’t and instead choose to fight me on my use of the Internet. 

I shouldn’t have to curb what I say to a doctor when it comes to Ronan.  When Ronan’s the focus of the conversation, it should be a two-way dialogue I have with his doctor:  I state the obvious (He’s sick again. I came to you for your expertise.), and they reply with logic (I can see that; thanks for asking me to help.  Tell me more so we can work together.).  But it doesn’t always go that way.  With some people, it’s only going to be their way or no way, especially if I throw that word Internet into the conversation.  Their ego, response and poor attitude that some medical professionals possess will never allow for meaningful conversation.  It only delays my hope to reach an important goal—to help a sick child, my child. 

As the focus moves far from my child and his needs, I’m told to stay away from the Internet.  In fact, don’t use it for any reason.  I’m tossed outdated facts and illogical suggestions of useless, watered-down fabrications while Ronan’s health is now completely ignored.  I went in asking for help, and I’m presented with nothing more than regurgitated-textbook mantra or worse, quoted studies funded by manufacturers or drug-makers themselves.  At that point, I know that it’s time to go. 

It’s a shame, really.  But it isn’t worth my time or my child’s life to continue speaking with people who cover their ears and then dismiss me the second I utter their sacred word.  When I am so bold to say Internet, and if the response is watching grown people throw a hissy fit about it, I know their days on Ronan’s team are numbered.  I’ll be forced to search for a suitable replacement.  Lucky for me, though, I can use the Internet as my guide!  With all that I can find on the web, I will read up on the next doctor’s credentials or that clinic’s success rate or a new therapist’s background.  I will do as much as I can, and read everything as possible so that Ronan’s needs aren’t compromised. 

I’m constantly on the Internet.  I know other parents and many doctors, nurses, administrators, educators, therapists and all sorts of professionals from every field are as well.  Most everyone relies on the information they find online for some reason or another.  For their personal gain or to share knowledge, the Internet has been a valuable tool.  Dodging pointed questions and concerns from a parent who merely wants to be informed, and stating that if they use websites or documents found on the Internet is objectionable—be it information about autism, vaccines, medical procedures, pharmaceuticals or bureaucratic practices—it’s all very absurd.  

We live in a big, big world where the Internet has only improved since its inception.  It provides more and more, and faster and faster now, too.  Countless people are kept abreast with research, with advancements and with the latest and greatest.  Information needed and information that is able to save lives can be found on many, many webpages.  Limiting that information and telling parents to stop talking about what they find online makes me think someone doesn’t want parents to find out the truth (or better yet, the lies).  Deciding who is worthy enough to peek at that information isn’t right.  It certainly won’t help parents help their children.  And, ultimately, improving their child’s life is the goal.  Parents will continue to do all of that and so much more for their children because others willingly left them behind. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

[gavrillo]

Do not consult the internet . Do not educate yourselves .
Do not challenge our false ,lying ,thieving ,so called authorities who we have mistakenly trusted .
Believe the fallacy that you can "green" our vaccines .

Instead trust the mis-information experts at the BBC .
I'm fully expecting a new non-science story from them any day now (seems they release this nonsense every 2/3 months).

What will it be this time BBC ? Dutch Elm disease causes autism perhaps ?

BBC = Bought , Bribed & Criminal

[Cherry Sperlin Misra]

To "First do no harm" - Hey , thats a terrific metafor. I can really relate to that one. We have lots of huge cockroaches in India! And you are right- When it comes to the science- the vaccine army knows virtually nothing . They hide behind the petticoats of Dr. Paul Offit, who is the only immunologist that big Pharma can find to defend the criminal vaccine schedule.

[Cherry Sperlin Misra]

To Justin Owen- You must be a young healthy person and had a mom like mine who believed that doctors always knew the truth.Stick around a few years more and you too will get bitten by the mediocre medical mind bug.
Remember a couple of things:A. Probably about 50% of doctors went into medicine to MAKE MONEY ! B That doctor in front of you studied when? Maybe 20 years ago . What textbook did he study? One that hadnt changed in a very long time, because it is difficult to change texts until a new concept is accepted. Soooo- youre looking at a doctor with the knowledge of maybe 40 years ago! Yes, maybe he has learned some new things- possibly contaminated by junk research by pharmaceutical companies,.... He doesnt have time to actually look at the research.
I agree with you, however, parents should be kinder to their pediatricians. In fact they could go so far as extend a little pity to that poor doctor who doesnt have time to get on the internet.

[Sylvia]

"The days of pompous quacks are numbered, and they know it."

DARN TOOTIN' Karin!!!!!

They are desperate, like the book burners of past years. They want to protect their turf, but are helpless to do it. No way can they stop the pursuit of knowledge. And it BURNS THEM UP!

[oneVoice]

In summary the medical model of care loves "yes doctor"patients
and does not like well prepared,educated and well researched
health consumers who wants to actively participate in their own care.Too bad for them,they will have to change and adjust to this new reality.

[Zed]

@Jeff C: Great point about the parent-child vs. adult-adult mentality of the typical mainstream medical paradigm. A great point is made in "The Magic of Touch" (sorry, can't recall the author's name) by observing that in the typical doctor-patient dynamic, the doctor has the 'social liberty' to touch you ANYwhere; conversely, you do NOT touch the doctor. These days, you're lucky if you get a handshake.

[Jeff C]

Certainly there is plenty on nonsense on the internet, something that can be easily confirmed in a few minutes. The medical establishment has jumped on this fact to discredit any patient/parent involvement whatsoever. So when I (engineering manager with a strong scientific education and training) read the same medical journals they read it is laughingly dismissed as Google University.

Wouldn't it be nice if people at our jobs just did what we told them to do without questions? Wouldn't it be nice if we didn't have to explain our thinking and rationale or justify a course of action? It might be nice for us in the short term, but it would be terrible for the business. Challenge and competition breeds innovation, it makes us better and improves the product.

Physicians don't seem to get this. They are long accustomed to dealing with us with a parent-child dynamic, rather than the adult-adult dynamic present in just about every other business (and it is just another business). The entire system is structured to enforce this dynamic; the white coats, the diploma on the wall, we call them "Doctor" they call us by our first name, the cooling our heals in the waiting room until they get around to us, and the abrupt manner. How many of us would put up with this from anyone else we hire? Imagine your mechanic or tax preparer acting like this.

The internet has allowed those with some intelligence and research skills into the hallowed shrine of the physician priesthood. It has leveled the field and those who used to be firmly in charge don't like it, just as the Church didn't like it when the printing press allowed people to read the Bible for themselves. Knowledge is power. More knowledge for us means less for them, it really is that simple.

[Free Facts]

Thanks for so elegantly pointing out how ridiculous it is for health providers to get their knickers in a twist about the internet being used to solve kids' medical problems and expose the biggest white collar crime in modern history.

Here's a gem:
"A 1982 handbook on computing at MIT's AI Lab stated regarding network etiquette:[20]

It is considered illegal to use the ARPANet for anything which is not in direct support of Government business ... "

Whoops! It seems maybe the Government and Academe didn't really think through the consequences of the powerful tool they created for sharing data. Considering MIT's recent role in l'affair Aaron Swartz and keeping taxpayer-funded research safely stowed behind paywalls, it seems that a lot of folks are still stuck in 1982. If there weren't so many sick kids who desperately needed help, it would almost be funny to watch the functionaries in their legwarmers and headbands trying to put the knowledge ketchup back in the bottle.

[Gina]

I love using the Internet, I read publications by doctors and I do tons of research on the Internet. I will tell you the app for Web M.D. Is possibly the worst symptom checker ever! Nonetheless, the Internet is a great source for information. We try to educate ourselves so when we are spoken to in with medical terminology we understand what we are being told. Sometimes if I myself am not feeling so great, I try to google why I'm feeling the way I feel and when I go to the Dr, it impresses me if he has the same diagnosis the Internet gave me.
I don't think there is anything wrong with research, however you can't get caught up with everyone's opinions because quite frankly they are opinions. I think if you find what your looking for that's great. Just try not to dig too deep and make yourself crazy, which I have to admit I have done.
The Internet is a great way to talk to one another and voice our opinions just like we are doing now. I learn a lot just from reading Age of Autism, I think we all have the right to help each other with our experiences and leave reviews and it has saved me a lot of trouble from choosing a Dr, or a plumber for that matter because of reading articles and reviews! I'm not going to stop either.

[Paula Chaiken]

Just heard about a pediatrician who yelled at the parent of a patient for taking the child to a chiropractor. What are they so scared of?

[cmo]

FDA Tyranny

Burzynski: Cancer is Serious Business

opening 4 minute scene

http://www.youtube.com/watch?v=Be1ihuZNg84

Quite a medical documentary in regards to the trillion dollar US cancer industry.

Obviously a cancer therapy that does away with chemo and radiation cannot be allowed to be patented & controlled by one individual.

Burzynski, the Movie http://www.burzynskimovie.com/

[MychildMychoice]

I get so annoyed at that state farm commercial basically mocking people who "read it on the internet". I feel like they are insinuating that TV is the REAL TRUTH TELLER.
Meanwhile, CNN and the rest of "NEWS" media spew nothing but one sided CDC manipulated garbage. Always going back to disease prevention and saying children who aren't vaccinated pose a huge risk to vaccinated children. Where is the logic in that thinking? Babies aren't born with illnesses. That logic is seriously flawed. Not to mention how short they are on any evidence (other than manipulated statistics) to prove that vaccines even work at all. What i DO see... is an ingredient list: chemicals cocktails, toxic metals, and human/animal DNA.
Ummm... yeah no thanks. :)

[Karin]

Doctors tend to forget a crucial fact: we are the clients and we PAY for their services. Not the other way around.

Just like the mechanics who fix my car. If they give me sh*t, I'll have my car fixed by someone else, who has better skills and more integrity.

The good thing with the internet, is now I can look up reviews and stay clear of those who stink.

The days of pompous quacks are numbered, and they know it.

[Jeannette Bishop]

I think it's at least as much about keeping healthcare providers in the dark as anyone else. I mean western "healthcare" seems a sort of top-down control pyramidal industry, and very conditioned into our society to be that way. The thing that bothers me most is that it seems like "medical" people may not truly be the ones at the very top of the decision making process, but most in the middle seem conditioned (or forced?) to trust the system and to avoid "looking it up" themselves. If they practice within "the bounds" and harm someone, there is no consequence. Often, they profit more, as patients and caregivers alike are usually ignorant of the source (am I being too kind?) and under the current system fairly easily dominated and more "treatment" becomes necessary.

If they practice out of bounds, and help someone--actually, I think this bothers me more than the above--they are often taking a huge personal risk.

But if there are people like me who have not been helped, or "helped" but also harmed, every time (and I mean every time) a mainstream intervention is applied, and it takes years of increasing suffering to figure out what is going on, even the added intense injury of my own child to figure much of it out, and I have to risk censure to find something that remedies safely even just a little of all the harm, something very evil and wrong is going on, no matter what individual intentions are.

Medical training and licensing and federal "regulatory" agencies and "peer review" and especially "following doctors' orders" did not prevent reckless harmful practice in my case or my daughter's case. Most of the above actually enabled it.

[Vicki Hill]

In my experience, the wise docs viewed the parent as a partner. They sought the parent's input, they were eager to confer with colleagues, and they were interested in research articles from the Internet.

On the other hand, the docs who knew the least berated parents, made fun of using the Internet to gain knowledge, and never wanted to collaborate with other doctors. They were the docs...and they knew it all!

Run like mad from the know-it-alls. Embrace those who question and are willing to learn and work with you.

[Jenny]

Said the character Will, in the movie Good Will Hunting, to the pompous d***head in the Harvard bar, " . . . you dropped a hundred and fifty grand on a fuckin education you coulda got for a dollah fifty in late chahges at the public library."

Except now the "townies" don't even need to walk to the library to get a more relevent education than what someone just spent $150,000.00 on.

And because now they have to work all day long to make money to repay that loan (and they don't even net any proceeds until after about the first 20 customers of the day thanks to how the system is set up) they will never have the time to become relevant. And you're there with papers in hand reminding them of the reality of the situation. But there are 15 other stupid patients behind you with whom he can regain his carefully constucted tower of self-worth.

Consider yourself lucky, indeed, if you have found a doctor with whom you can have an intelligent conversation, even if you have to send your research along ahead of time with the comment that you "sho nuff would 'preciate his take on the matter."

[Linda]

Justin,
The medical profession has done a thorough job of discrediting itself. That's something to feel sad about. People have every right to be angry with the way they've been treated and to voice their displeasure.

[Linda]

Barbaraj,
You're right. We're being bombarded, more and more every day. Cell phones, Wi-Fi in homes, schools, restaurants, etc., cell phone towers, often right next to schools, products that give off high EMFs (like lap tops - extremely high EMFs - easily measurable with a Tri-Field meter)used by men on their laps (near the seeds that will become their future children), by pregnant women inches from their fetuses, by children from earlier and earlier ages, close to organs including ovaries containing future generations...All these technologies are new and experimental. Studies have shown them to be harmful. Information is being suppressed, government agencies are paid to look the other way while favorable laws are passed and vigorously protected by those profiting from them. It's the same as vaccines. Different products, same crime. As far as I can see, less awareness. WHO even admits that cell phones are "possibly carcinogenic". Yet all the kids have them, to their heads.

[Linda]

They tell you to stay off the internet because once you go on you will know more than they do and it will take them more than the 2 minutes they've allotted to your visit to deal with you. The educated aren't easily impressed or dominated by BS.

[Letthembegot]

Justin, Doctors dont dedicate their lives they earn a salary and they are not taught to think for themselves they are extremeley compliant and as a result academically able but they are no longer in a position of privileged information. Its all there for us Joe Public types to read.

Time and again I have been able to prove doctors wrong. 3 different Paediatricians in the maternity ward told me the Vitamin K shot given at birth did not contain Aluminium eventually I dug out the shot insert and was able to show them the list of ingredients and right there was Aluminium- I received no apology only further scorn for making my own decision which they did not agree with. Other examples of doctors misinforming me regarding a child with severe gut issues...my research led me to the first major improvement in 4 years and when I shared what I had done with the Doctors yet again they had to accept what I said was correct despite having disagreed with me previously.

I would need to be in a really bad situation to consider taking treatment or advice from any doctor based on my previous experience not just a hunch ..do you see, they were unable to think beyond what they thought they knew ?

[Sarah]

Justin said; "Frankly there is a lot of medical quackery out there, this cannot be denied - so many of these theories I see expounded with great authority on the web are completely contradictory, and yet often mutually exclusive ideas are championed as though both must be true."

Justin,

As a parent I see many contradictions coming from the mainstream medical and scientific communities which is exactly why parents like myself take to the internet:

Autism is genetic:

How is that possible without considering environmental triggers. The reporting on autism is often slanted toward genetics and environmental piece is often ignored. Why is that? Why aren't toxicologists consulted?

Genetic epidemic of Autism:

There cannot have an epidemic of a genetic condition yet many experts have said that autism is increasing at an alarming rate. The CDC says autism is a public health "emergency". A genetic health emergency?? really?

The autism increase is due to "better diagnosing":

We often hear autism is due to bettter diagnosing- how can that be when the same diagnostic criteria have been used for years?

No link to vaccines:

Mainstream medical establishment repearedly says there is no link between vaccines and autism meanwhile there have been many cases settled by HHS in vaccine court where the child was dxed with autism after getting multiple vaccines leading to encephalopathy.

Autism is medically untreatable:

How can that be when some kids been recovered to the point of losing their diagnosis? The have been many reports signficant improvements in the children with treatment such as addressing GI inflammation.

These are just some of the contradictions often repeated by people in the mainstream medical and scientific community. People who should know better. This is why parents turn to the internet. I suspect this is why the medical community doesn't want us on the internet b/c we are finding blatant contradictions and calling them on it. They have consistently got autism wrong.

[Victor Pavlovic]

Cathy, you're absolutely right, the doctors tell parents to stay off the internet, my question is why? this is the year 2013 and everything is on the internet, the easiest fastest way to information, they sound backwards, in-fact they are backwards so where have they been? under a rock of course, as they are in their research for causes and cures for diseases, should we start looking under a tree as they are when they look for the causes of autism, maybe we should first do genetic research when needing directions to an address, or particular location, all colleges in the world use computers and the internet to look up information, what a pathetic group of incompetent doctors they are that give parents advice to stay off the internet, they are afraid that the parents know more with the stroke of a key, than what they have been told by the Drug Companies about the dangers and diseases their vaccines continue to cause, maybe they need to get "ON THE INTERNET MORE" and learn a thing or two, yes they are pathetic indeed!

[Patricia]

Wondeful article Cathy! Long overdue. And great great comments. 6 years ago I was finally diagnosed with M.E. after lengthy hospital tests of just about everything. After 6 weeks of nothing to report in all the tests I started to do my own research on the net. After a few days I walked into my doctor's surgery and said 'I've been researching my symptoms on the internet and I think I have M.E.' (chronic fatigue). My wonderfully enlightened doctor smiled sadly at me and said 'I think you're right'. Not a word or a look of criticism. He is what's known as a traditionally trained G.P. and he has opened a clinic that also embraces holistic principles, allowing the body to heal itself where possible, with the aid of supplements and a suitable diet programme. Wot a man!!!! You lucky people in Aukland New Zealand, that is where he now practices.
Most GP's in Europe are civil servants of the Government Health Services. Afraid of being undermined from every quarter. Few have the confidence to allow their own patients to express any desire to assist them in their diagnosis or treatment plan or even to express a need to make their own enquiries. We come to their surgeries for HELP, not arrogant castigation.

[Benedetta]

Justin Owen
The abusive attitude came from the doctors not from me.
For 17 years my son had seizures.
He even had absentee seizure right in the doctors office as he sucked his hands and trimbled.
My son has only mild autims.
She - the doc - wrote that he would have to be instutitonalized -- my son saw her about a dozen time that summer and she could not remember him from one visit to another except to make me feel that I bothering her.

The are the ones taking in patients for 15 minute time periods -- for 150 dollars a pop regardless if they are helping or not

I don't think it is right that thye ignored (and it was not just her) my son's seizures or 17 years. We are not talking about just me reporting absentee seizures, but also grand mals, events that lead us to the emergency room in which I got the standarad speech that a seizure was not an emergrency event - except if it last more than five minutes. -- in which I got to say -- yeap this one did,and then he went on ahead a seized again.

We are talking 30 years of this crap for my husband (vaccine injured at age 28) my daugther and my son.

They collected a lot of money off of us.
I was trapped into their services.

How many times do you keep taking a car back to get it fixed before you get fed up and frustrated?

[Justin Owen]

I feel extremely sad about all your stories and the apparent lack of understanding you have been on the receiving end of.
What shocks me the most is the dehumanising language so prevalent in your descriptions of medical practitioners. Doctors are humans too, and should be subjected to this no more than anyone else. Furthermore, and I know this will sound controversial, they have actually dedicated their lives to helping people like you guys.
Frankly there is a lot of medical quackery out there, this cannot be denied - so many of these theories I see expounded with great authority on the web are completely contradictory, and yet often mutually exclusive ideas are championed as though both must be true.
Medicine is a complicated subject, the human body is a complicated piece of kit, work with Doctors, not against them. Most welcome patients who research as much as you can, but please understand that reading someone's opinion on a website does not constitute research.
Frankly, if I was faced clinically by some of the abusive language I have just been reading here, I would also struggle not to let my emotional reaction show.

[Rachel]

Thank you ladies for the suggestions. I will try the vitamin C, and am weaning my son off rice. That is really the only grain he eats :)

That is what I love about this site, everyone pulls together and tries to help each other out. We all know first hand what it is like to be "in the trenches."

[Tj]

First thing ped said after my son's hfa dx (which I had to beg him for a referral to even get tested) was "Stay off the Internet"

[Theodora]

I refuse to take any doctor seriously who won't help me and in fact that I am not sick in the first place. I actually started into supplements and studying herbalism more seriously because the doctors wouldn't even try to figure out why my legs started spasmsing constantly out of nowhere and have contiued to do that non stop now for years. I "looked up" symptoms, then looked up the supplements. Still in pain but at least I can still walk and get through the day. No thanks to the doctor, all thanks to the net!

[Riley]

My autistic son's doctor looks up ways to help on the Internet.

[Benedetta]

One Voice;
Thanks for your concern, I did not mean to be critical - I too thought it was great too, but now I don't think it is???
My side has not troubled me since - well it took a while after I stopped the flax seed oil, but it slowly went away. I will just keep my finger's cross, that it won't come back.

I am beginning to think that the most important thing in your diet is not vegetables, fiber or even protein but good fat.

And the margarine invented right after WWII is not it.
And now I am just a little scared of flax seed oil too.

[barbaraj]

I spend a great deal of my time "looking it up". The addition of microwaves into society always grabs my "internet interests", tonight I came upon this, and was thoroughly impressed, maybe more than I should be. Within the talk , the biological ,epigenetic, perhaps origin of denova all were addressed. Now, always KNOWING, and I do not waiver, that vaccine induces autism, it has always seemed likely that other processes could pave the road. In the case of regressive autism, the likelihood of damaging mercury setting the stage is very real, and now perhaps this addition of microwave technology may very well provide a similar blood brain barrier break allowing for the similar open pathway for the vaccines to send all manners of viral, bacterial, chemical debris to the brain. A must read IMO , presented by Devra Davis.
http://www.youtube.com/watch?v=wNNSztN7wJc&feature=player_embedded

[Kapoore]

Where would we be without the internet? What a scary thought? There are some brilliant doctors who treat individual patients as individuals, not as slots in the schedule. Unfortunately, medicine has become the number 1 killer in the U. S. and the sorts of things people can buy on the internet are not even close to as lethal as the drugs that doctors prescribe. Take, for example, curcumen, which might actually lower inflammation without the side effects of anti-inflammatory drugs. I know how lethal medicine can be. My father went into code blue and nearly bled to death after a minor operation, he managed to live a year longer after spending 7 weeks in intensive care. My mother died when the doctor switched one of her medications and she was dead from a heart attack within 5 hours after taking the new drug for the first time. Yes, heart attack was one of the side effects listed on the risk factor sheet. The MMR probably triggered celiac disease in my daughter. At least two other members of my extended family are probably vaccine injured. I still, though, go to doctors for check ups--like the skin doctor. But I pay the big money for the boutique doctors when it comes to getting a blood test because I don't want to fit into an insurance protocol. I want to be treated as an individual. For everything else I use the internet. And I believe I and other people who have been through the medical wringer are smart enough to figure out what information is valuable and what information is just junk.

[Allison]

Dear Rachel,

It completely disgusts me, too! My son is 14; this SHOULD NOT still be happening to kids, and it should NEVER have happened to yours. They knew, and they let it happen anyway.

Anyhow, I wanted to share what I have found about constipation. We had terrible problems with the same. Be very careful with fiber, because fiber will bulk up bowel movements - which was the very last thing my son needed. The absolute cure for his constipation came with vitamin C. You can experiment with giving him a tablet once or twice a day. When you give too much, it simply gives them runny bowel movements. The right amount for my son was one crushed vitamin c (500 mg) per day. You can give it all at once, or divide it in half and give it twice a day to spread it out better. I have recommended vitamin c to lots of other Moms (with both ADHD and autistic kids), and they have had great results.

Additionally, there is a product called Equilib, put out by Evince. It is like a specially formulated autism supplement (took the place of super nu thera for us). Once we started with this product, we were able to eliminate the vitamin c all together. It keeps my son extremely regular. He is also doing fantastic in many other ways.

Hope this is of some help. Allison

[oneVoice]

Thank you Eileen Nicole Simon to your contribution.
Benedetta,
Each oils bring their own gifts or properties to the human diet.The oils I have recommended need to be cold processed
and certified organic.The population is Omega 3 deficient,
which means they do not receive the right kind of oils.These
oils can not be used in cooking only in cold processed salad dressings or smoothies to prevent their integrity.
Sure fish oil is great,but you need to know where is from and how is it processed.Organic cold-pressed multivariety-oils (flax,hemp,fish,sesame,olive,sunflower)will meet the
body's need the best way.Flaxseed is great if it is freshly
grounded and kept in the fridge.We need to support each other and most of these contributions are here to offer help and support each other.Sorry about your pancreas troubles,have it checked out.

[Carter's Daddy]

By contrast, our DAN! has told us he likes working with us BECAUSE (mostly the better half of)we research various treatment options. When he suggests something we usually know why. We ask him about things we have found, and he likes that. We go back and forth over dosing details. He wants parents participating, not just riding along. It matters to him that it's that important to the parent that the child gets better. He consults with people like Nancy O'Hara and Bradstreet and I think even Pangborn IIRC, about our boy. It's quite an honour for me, that. Because we live in Canada we need to visit Dr. O'hara annually because of some things we can't get here, and our DAN! is not only OK but encourages it. BTW she is really nice too!

[AutismGrandma]

Re: "For a parent to admit they might have looked something up “online” while face-to-face in an exam room with their child’s medical provider—you would have thought it criminal! It should be outlawed! And, don’t dare tell anyone else you did that. EVER. If you do? Oh, boy."

When my grandson was in the hospital for his intestinal issues, including malabsorption which caused nutrient deficiencies, a staff pediatrician called me to lecture me about the "dangers of nutritional supplements, which are 'drugs', and should not be administered to any child without a prescription". According to her conclusion, I was "practicing medicine without a license" by giving my grandson nutritional supplements, especially probiotics, which according to her, are "extremely dangerous due to their bacterial content, since he was susceptible to bacterial infections, especially since he was not vaccinated". When I tried to clarify the difference between healthy versus unhealthy organisms, and stated to her that probiotics are included in all European infant formulas, she just ignored me and kept right on with her lecture in her cold and calculated droning pitch. ("Nurse Kratchet" from One Flew Over the Cuckoos Nest came to mind) When she asked me where I got these ideas from, I honestly told her "from researching on the INTERNET", whereby she suddenly transformed from her droning repetitions into an angry tyrade. Up to this point she was attempting to contain her seething contempt for me, so it was that magic word that tripped her trigger: “INTERNET”.

Then she commanded me to “refrain any further INTERNET research except for on the AAP website”, which according to her is “the only reliable website for pediatric information”. I told her that “the medical system has entirely failed my grandson, and the INTERNET is a reliable source of accurate information.” She did NOT want to hear that!!! But we have to let these indoctrinated doctors know that we are not going to just sit here and wait around for them to find out what is really going on.

For the “crimes” of giving my grandson nutritional supplements, probiotics and especially for not vaccinating him, the hospital staff physicians referred us to Child Protective Services. They refused to release my daughter’s son from the hospital unless she agreed to have him vaccinated, and threatened to remove custody of him from her. Consequently, he received a total of 27 doses of vaccines within 6 months, the final batch of 9 doses including MMR immediately resulted in him no longer being able to walk or talk, and pushed him right over the cliff into autism….

But thankfully due to reliable factual information on the INTERNET, my grandson’s ability to walk and talk have been restored and his intestinal issues have gradually improved. He still wears diapers and still requires the majority of his nutrition from bottle feedings with pre-digested protein and other nutritional supplements, but we are grateful for his progress and I will continue to pray for divine guidance and will continue to research on the INTERNET for further answers.

All of this reminds me of Germany in WWII, where Nazi government radio information was the only sanctioned legal option. Anyone caught listening to Radio Free Europe was thrown into a concentration camp. Were Jewish people and many others being killed with poison gas in concentration camps? Radio Free Europe said Yes it’s true. Are babies and children being poisoned with vaccines? The INTERNET says Yes it’s true.

[Benedetta]

Also from reading article after article on the internet - fish oil has much more omega three oils than flax seed oil so if your going to bother to take the time to take a supplement reach for cod or fish oil or even the MCT oil.

We started taking that and it is good stuff!
I was suprised!

Eileen Nicole Simon;
Oh, what we have to put up with.
Do you think all this is a greater plan somehow; that when it is all over and we die-- that God is indeed our father and we all join together with one thought - joining all our experiences to become one--- that doctor that laughed -- will there still be embarassment or will he get kicked out from us all?
Maybe it won't work like that at all.
But - I know that we are all hurt so bad by this; that we have to leave it up to God to do the punishment and the judgement for we are too small to right it on our own.

[Benedetta]

One Voice;
I don't think flax seed oil is good.
I have one thing to base that on though.
Last fall I was trying to get my good cholesterol up so I could get a good price on health insurance.

I took a swallow every day and right after that my left side hurt. It is like I had a mild case of panacreatitis or maybe the spleen trouble. I think it was the flax seed oil. I did some reading on *THE INTERNET* and there are some studies that say flax seed OIL is not that healthy or good for you.

The flax seed flour however seems to do very nice - an there are a few studies on the internet that says it is a good flour. I sprinkle it in with oatmeal, or soy protein, or oat brand, or even whole wheat (we are not allergic to gluten, it is the carbs that we have trouble breaking down.)
Also my thyroid test came back later and I have to up my dose of thyroid medicine so what ever autoimmune disease I had became worse this fall - and the only thing different was the flax seed oil.

[ln]

When people make comments about the internet not being "reliable or accurate" I usually respond asking them how "reliable and accurate" the library is because it's all the same information and then some. Then I point out they are basically saying that I can't be trusted to understand what I am reading. That then leads to me rattling off some of the books/websites and documents I have been "researching" which pretty much ends the argument right there.

[oneVoice]

Dear Rachel,
Lot of the doctors do not provide nutritional advice to parents.You may want to review how much fibers he is receiving (need about 25-30gr daily)also adequate fluid is
required for the fibers to work properly.Ideally 70-80%
should be coming from vegetables and 20-30% from fruits.
A blender or mixer is great as chopped up nutrients absorb better and kids more willing to accept a smoothie.Essential
fatty acids could be also included as these nourish the
brain,neurons and are anti-inflammatory (for the bowels). Organic Flax seed
oils,Udo's oils are great choice to nourish your child. We
have to take responsibility for our health,the medical model had failed us.

[Eileen Nicole Simon]

In 1969 I worked as a computer programmer in the Satellite Tracking Program, and I eagerly read the Scientific American every month. When the October 1969 issue arrived in my mailbox, how could I not see (and immediately read) the article by William Windle on brain damage caused by asphyxia at birth? My first son had been diagnosed with “mild” cerebral palsy, then with autism after his brother was diagnosed with autism. Both had suffered trauma and anoxia at birth.

When I showed the article to our pediatrician, he (laughingly) told me I should not be reading anything, and that a little knowledge can be dangerous for middle-American women like me. Can you imagine my outrage???

Women back then were also not supposed to work, but I continued working in software engineering at Bolt Beranek and Newman, where the ARPA net was developed, which led to development of the internet as we know it. I also went back to school and got a PhD in Biochemistry along the way.

The internet serves above all else to support free speech. I put up my website on autism (conradsimon.org) in the year 2000. Now I am self-publishing ebooks via Barnes & Noble’s Pubit website, a further extension of free speech. This AOA site is an excellent example of free speech because participation is invited. Thank you.

So keep using the internet, and keep questioning authority. The medical establishment will have to adapt at some point to working with well educated consumers.

[Teresa Conrick]

Thanks, Cat.

All so true. My middle name is "Look it up!" = ]

[Cat Jameson]

Thanks for the feedback on the post. We've all run into some illogical responses when we start out by saying "I've done a little bit of reading..."

For one appointment I had for my daughter, I purposely did not go online as much as I do for Ronan (hers was not as severe an issue as Ronan's). As I asked questions and listened to the doctor discuss the problems my daughter had, he said, "You know you can look up the condition online; have you looked it up yet?" I said, "Nope, not yet, but I'm sure I'll find a great deal of when I Google it." He looked at me as if I was a foolish fool for letting all that internet knowledge go to waste.

I guess as long as it's not autism/vaccine injury/mitochondrial disease/PANDAS/PANS/etc.....parents are fee to search the net for whatever info they want.

Carry on, well-informed parents. Carry on :)
Cat

[Rachel]

I took my kids in for physicals a couple of weeks ago. My 9 year old (who has autism) and my 7 year old (who has NOT been vaccinated since he was 4 months old) BOTH weigh 58 lbs. My nine year old is 5 INCHES taller than his brother! He has dark circles under his eyes, is painfully thin, and we are constantly dealing with constipation issues. He is a very happy (for the most part) loving child. When I pointed out his problems to her, the response I received was "he looks great! WTF?!!!! If it were not for the fact that my current pediatrician (we have been kicked out of 3 peds offices in the past 6 years for not vaccinating) is ok with our not vaccinating our kids, I would have walked out. It is a crime that I have to go to a doctor in another town to get medical care for my kids because no other doctor will treat us. It is even more of a crime that every time my children get tests or have to go the ER, I have to be afraid that I will get some arrogant, now it all a-hole who could report us to CPS for not vaccinating. I am just do disgusted with it all!

[Valerie Foley]

Some days, the sneering over my questions and my (internet) research, despite the complete lack of any credible research to back up their statements like

'(insert medical symptom) is behavioural/emotional'

gets too much to handle.

This is our latest attempt to get to the bottom of our son's seizures here in Australia: http://jumpontherollercoaster.blogspot.com.au/2012/06/what-should-be-and-what-is.html

It's actually getting frightening.

[barbaraj]

Tanner's dad, I lost my phone, internet, and cable tv package, that same day I ran up to radio shack, picked up a "clear", set myself up on google voice to text , and gmail to phone, eventually picked up a ROKU so I could watch cnn international the kids can watch cartoons and movies, and saved myself 120 a month. My "clear" is 42 a month, I believe it was 35 but I took a "plan" to be on the safe side for an extra 7. I have an old linksys hooked to an old computer, and run wi-fi for my laptop and roku. In the beginning the kids complained about "lag"on xbox, but for some reason by plugging in the hard line it's okay now. So there ya go, I hope your experience is temporary but for about 12.50 a week this works!

[Son in Recovery]

My 7 year old son would still be in diapers and poop smearing if it had not been for the internet. I thank the powers that be ever day for the internet. I diagnosed his PANDAS 2 1/2 years ago by researching on the internet and Finally had a DAN doctor listen to me last year... guess what - PANDAS positive. A recent additional diagnosis of Epstein Barr has inspired me to research Frequency Healing since my son is a magnet for viruses and bacteria. I have not seen my son this happy is several months two weeks into zapping. I had my own outbreak of canker sores in my mouth over the weekend... most likely related to his Epstein Barr (also a form of herpes). 30 minutes of plate zapping and my canker sores were gone. Just Google it - Frequency Healing..... Dr. Raymond Rife and Dr. Hulda Clark. Is your autistic child a viral / bacterial kid... if so - let your fingers do the walking in the internet... I'm so thankful every day for the world wide web!!

[Lynn]

Again, it seems to "point out", those in "power" "medical power", need a "Soft Target" "Uneducated Target" to feel safe and in control.

The best Teachers i had were the ones who were NOT scared of questions, or not knowing the answer. These Teachers knew what they knew, understood that research could improve everyone's understanding.

[Carter's Daddy]

They don't seem to really teach them much at all in med school, besides the line Pharma wants them to toe, so it's not just that you find some info that might challenge that line that bothers your MD, but also that you know more than he does or something he doesn't. Alpha male pride. Despite the moniker it applies to women MDs too. When I took my then 7 YO daughter in to see about a bit of urinal bleeding which had by now stopped, despite testing her urine and it coming back fine, MD wanted her to go through antibiotics. This was the other MD in the office. Ours was on holiday and he would not have made this recommendation. Regular MD is aware of what we do with a DAN and he does not interfere, and is pretty nice about it. I told substitute MD that we were in the process of trying to improve her gut flora, not killing it, and it would really set her back, and you just told me the infection was gone. His answer to me was "I don't follow". I was a bit shocked that he either didn't know what I was talking about or pretended not to. Apparently it was likely from her wiping her bum the wrong direction, and girls have shorter urethras making them more susceptible. Later Mrs said I should just keep quiet, take the scrip and just don't fill it, but I wanted this guy to know what I thought of his assembly line allopathy.

[Karin]

And it's not only autism:

My fiend's sister had to bring her 7 year old daughter to the doctor, urgent care and ER, several times over a period of a couple months, for a variety of seemingly-unrelated problems. Worried by the sudden onset of these frequent issues, the mom, who had zero medical or scientific training, finally googled her daughter's symptoms, and kept finding references to leukemia.

So she went back to the doctor, described her internet findings, and asked if her daughter could be tested for leukemia. She was yelled at, barked at, laughed at, ridiculed and lectured on the dangers of 'playing doctor'. But still, blood was drawn.

And when the results came in, the doctor apologized, since her daughter indeed had leukemia. She was able to start chemo immediately and a year later is in remission.

[Benedetta]

Tanner's Dad;
Thanks for the link it was a good article. Eye rolls indeed!

It is a scary o'le time for us all!

[Benedetta]

Sarah;
Thanks Sarah for the copy/paste;

Molly is not nothing; you can tell.
Big words like mitochondia made her project on you (good comment and hit home). Also if she was a student - she would not have time to be on the internet - trust me on this one, they keep you busy. She is a liar.

I too was run off from Joe's Kawasaki's website. I was talked to in the most rudest way because they wanted me to quite but I wouldn't. So they shut me down. Well good for them - their motto at the top of the site was that anything could be discussed and was not off limits. I wish I had the exact words - I would like to cram it back down Joe's throat.

Dave's garden had a voting thing with comments about How are you preparing for your summer for emergencies; do you have a first aid kit and up to date on your tetanus shot.
.
After I commented on what happened with me getting hurt on a horse and how I was told the tetanus was really a DPT shot; plus very briefly what happened to my family with vaccns there was a flurry of comments.

One person said that they were getting their tetanus shot because they believed in modern medicine.

My return comment was what I beleive in is God and modern medicine was made by man.
Then of course there is always a retired physcian that always seems to show up.
Sure are a lot of Docs/grad students out there with nothing to do but be on the internet.

[Steve]

First you have to let people know Sym's (or Filene's) exits

Then the have to understand why it is better. Not just better but make the typical clothing store laughable in comparison.

Yet most people, having no idea how to dress and/or shop wisely, don't get it, which is why Sym's/Filene's folded.

Just like healthcare

[first do no harm]

The internet shines a bright light on the cockroaches in charge of the vaccine program. Watching them scamper in the glare of that light is truly pathetic. Over time, that bright light will become as intense as the sun.

[Vicki Hill]

Excellent point, Cathy. I learned a long time ago that the good doctors asked lots of questions and wanted to consult with peers. The not-so-good doctors knew it all and expected the patient to just sit back and listen to them pontificate about their knowledge.

LOL...many years ago, I dated a physics professor who had had some medical problems. He told me that he realized the medical doctors had no more training in medicine than he had in physics. He was fully aware of how much physics he didn't yet know; did any of those medical doctors realize how much medicine they didn't yet know? Point well taken.

[Joyce]

The internet is our underground railroad. They attack every safe house and try to stop us at every turn but eventually we will be traveling on the same roads and highways freely. Period.

[Billie]

The docs that do that are bully doctors. When they treat you like that you should call them a bully. "Stop bullying me! I thought you were a professional. I'm going to turn you in for bullying if you don't appologize now!" Seriously! They don't know everything.... they only know what they are comfortable knowing.

[Parent]

I had a biomed physician suggest to me that I stop using the word "research" and substitute it with the word "read" (so that docs don't sneer at me behind my back).

Since I am a trained and licensed attorney I think I do - in fact - understand how to do "research." But you don't have to be a physician or an attorney to know how to read. It is ridiculous to suggest otherwise. And if a physician cannot explain to me - in layman's terms - why I'm wrong then how much does he/she really know about the subject? IMHO the mark of true knowledge is the ability to make the complex concept more comprehensible.

I question how much "research" mainstream pediatric clinicians do on a weekly or monthly basis.

I also believe that internet censorship is coming unless we are especially vigilant.

What I wouldn't give to have had the internet 18 years ago. :(

[Bridget N.]

Several years ago when my baby boy (now 8yo) was at the pediatrician's office, I happened to bring up the fact that certain vaccines were developed using cells from aborted babies. I also mentioned the possible autism connection during that same convesation. The way the doctor responded to me - and by responded, I mean raised his voice and talked down to me - was the most condescending and embarrassing doctor interaction of my life. He had never heard of the abortion connection, and he immediately and loudly dismissed the autism one. I was incensed to have been talked to that way, but I also lost a bit of the confidence I had when I walked into the office in the first place. Someone with an MD after his name just berated me...maybe he, the "smart and educated" one, had a point?

When I got home, I did a simple internet search, probably on Google or Yahoo, and with very few clicks of the mouse, I found the phamaceutical companies own documentation with regard to the aborted fetal cells. Detailed information was just a click away, but I was the moron for bringing it up?!

The internet is your friend and has been a Godsend for me and for my family. It helped me back then, and it helped me countless times since when doing medical research for all 3 of my kids. If a doctor doesn't like that I use it to INFORM myself, then that doctor can kiss my butt.

[Sarah]

I can totally relate to this Cathy. They are now attacking us through social networks. Yahoo news ran this story:

"Infant Vaccination 'Delays' Triple in Oregon: Study"

Here's an exchange I had with some other posters (I was so livid at their attack. I am so glad poster Michael silenced these too):

MICHAEL: "A study of MODERN immunology will reveal that the proper immune response is not fully functional in a child until they are about two years old. The CDC guidelines are based upon old science. While many vaccines are certainly helpful to both the individual and the "herd" immunity, the best bet is likely to breastfeed for 2 years then get the vaccines (preferably without preservatives like thimorosal- a mercury containing chemical)."

ME: "Michael you are making waaayyy too much sense. Whatever happened to simple logic that if you inject a young child with an immature immune and neurological system with too many shots it may cause problems. Critical thinking skills are not appreciated among the diehard pro vaccine crowd in fact any questioning of vaccines is considered a threat. Like good little sheeple, we are expected to do as we are told and march lock step and never, ever question"..

This is where posters Molly and Lynne chimed in:

MOLLY: "Michael & WM Worry--Wow, you've never cracked a immunology text in your lives, either of you!
Let me spell this out: From the moment a baby starts to slide out his mother's lady parts, he is encountering thousands of antigens (including quite a few from the aforementioned lady parts), ALL the time. Antigens from food, bedding, his folks, his other relatives, family pets, furniture, insects (and insect poo), bacteria, dust--his immune system is continually sizing up and reacting to whatever proteins he didn't encounter in utero."

The idea that a few more antigens are going to harm a baby is just breathtakingly ignorant.."

ME: "How the hell do you know? So, what do you know about the immune system? Do you know anything about brain's immunity- the microglia? That microglia can be damaged and defective microglia in the brain has been linked to mental illnesses such as OCD? Do you know anything about mitochondria and that many children with autism have been found to have an underlying mitochondrial dysfunction? That viruses and toxins can trigger a mito dysfunction which can be devastating to a young child. What do you know about autism. Do you think it's all behavioral or genetic with 1 in 88 kids now diagnosed and climbing? What is "breathtakingly ignorant" to use your words, is to put all children on the same immunization schedule when you have no idea whether their immune systems can tolerate the shots because individual immune response varies. Even the CDC admits that noone can predict how a young child's immune system will respond when provoked. Why should any parent put their child at risk for the so called herd?."

LYNNE: "WMW, the fact that you have a list of big words does not mean that you are able to understand the concepts behind them.

MollyNYC is completely right, and you are an idiot who conflates a lot of unrelated things with paranoia and myth to come up with a mighty big scare story."

ME: "you mean like mitochondria??? Is that a big word to you Lynne? Lynn I think it is you who doesn't understand the concept and you are projecting that on me. Projecting-you do know what that means right?"

MOLLY: "Actually, I have an undergraduate degree in biochemistry, an MS in biology, and I've spent the last year-and-a-half taking graduate-level neuroscience classes (including developmental neuroscience) in preparation for doctoral work. (And yes, there was a semester of immunology in there too.)

I have to agree with Lynne. You don't know a mitochondrion or a glial cell from a Zagnut bar.."

MICHAEL: "Molly, why are you so hostile and assuming? First of all, yes I have studied immunology at the graduate level, I am a physician with an undergraduate in biochemistry and molecular biology. Spend some time looking into the development of cell mediated immunity and the TH1/TH2/TH3 response in human infants, maybe some time on Pubmed will enlighten"

ME: "Molly has an extremely high opinion of herself and apparently assumes that autism parents who have the biggest stake in the science can't grasp the difference between mitochondria and glial cell. She also is a complete SNOB who looks down on parents from Oregon who dare question the wisdom of giving a young child so many shots. She should stop being so condescending to others, take a social skills class on how to be nice and get out of the lab more."

[TannersDad Tim]

Great post Cathy. I am facing tough times and our Internet will be turned off. I dred the thought of losing contact, losing an advocacy platform, and the wealth of news and information. I found this link in a medical news blog last year. They are very afraid of the Internet and are trying to teach Doctors to be like Jenny and Warrior Parents. I teach Social Media Advocacy and can tell you the first thing that needs to be checked at the door on the Internet and the exam room is a big Ego. In the exam room it hurts your child. On the Internet those with Big Egos are broadcasters boasting and not growing learning and sharing. Although this is an article that says mean things about Jenny, It must be taken as a compliment that they are so scared of her and us. TannersDad Tim

“No one has made us more aware of Autism and raised more questions than @JennyMcCarthy" - Diane Sawyer @GenRescue http://t.co/RXDaXcM #Hope