The other day on the Today Show, Dr. Nancy Snyderman presented a story of a family whose boy has "recovered" from autism.
I sat watching with my mouth open. I was stunned not because the boy made such progress over a disorder that pretty much every pediatrician will tell you is incurable, but because Dr. Nancy Snyderman was actually reporting on it on a major network news program. I had never seen such a thing! You see, we moms in the trenches of autism have been seeing some kids improve dramatically for years and years. We are the ones who have been the coordinators of improvement. The overseers, statisticians and documentarians of progress and recovery. But we are never asked to share that data by the American Associations of Pediatrics or the Center For Disease Control. Our doctor visits were virtually "hope-free". I have seen my own son -- now age 11 -- notch milestones that developmental pediatricians said he'd never, ever achieve. In fact the day he was diagnosed in 2000 at 3 years old is referred to at our home as the "Big Never Day". A disarmingly icy female pediatrician told us our son would "never" do so many things that he does today not the least of which are mainstreaming at school or saying "I love you, Mom" unprompted...check and check!
While I was encouraged by Dr. Snyderman's piece on young Jake Exkorn's success I couldn't help but be a bit cynical because after Matt Lauer said "it's a real sign of hope" Snyderman made such a deliberate point of declaring "and there's real science behind it and that's important". I took that very personally because so many pediatricians I have met with over the last 10 years would never validate stories from so many of us about how a lot of our kids responded to treatment-especially diet and biomedical which most seemed to regard as taboo for some reason. We have been ridiculed at the mere suggestion of recovery. My requests for blood work and other diagnostic work ups for my son were met with disdain. Why? Why wouldn't you want to comprehensively treat a child with autism? What might you learn about this devastating neurobiological disorder?
When I have spoken publically about our journey I have been criticized as a "celeb junk science peddler" for talking about what I believed triggered my son's autism, offering hope and discussing what has helped improve my boy's cognitive function. Unlike other celebrity autism activists' claims, my son is NOT "cured" or "recovered" (new hurdle is puberty which mixes poorly with autism, fun!)but his progress is noteworthy and in some ways we feel so blessed because tragically not every family has access to treatment and have been given zero hope from their doctors . That breaks my heart. But I have long seen that recovery is possible when all the stars align with a variety of treatments and the means to access them. It was surreal for me to see Dr. Snyderman tout this as some sort of "breaking news" or anomaly.
I will be upfront that I had not been a huge fan of Dr. Snyderman's hard-core rigid stand on vaccine safety. She has basically towed the line well by using her position on the Today Show to declare numerous times that there is no causation or link and basically relaying that all 30 plus shots given under every circumstance to every child is 100% safe all the time. Case closed. Jury dismissed. That is certainly her right to say that but well...that was not our experience. I know for a fact that not all kids can tolerate them because my kids could not. Let's identify them please before any damage is done and discuss alternatives. And if she is right then why then does the vaccine injury court even exist paying millions to families who have the resilience to go up against the machine and claim their child's autism spiral was kicked off by toxic overload of vaccines?
Overall, we just need pediatricians to have better, nuanced and less condescending conversations with parents concerned about vaccine safety because the "I'm a doctor and I'm never wrong" attitude is driving parents away from vaccines and I don't necessarily believe that is a good thing. I am not anti vaccine but I am anti people labeling me as such just because I raise concerns and objections based on my family's experience. After his devastating injury from the MMR shot in 1999 imagine my frustration when I couldn't find a single pediatrician who would work with me with alternative options as I struggled years later with giving the same shot to my two younger boys. They all come from the same gene pool after all and it is not uncommon that several siblings can get autism. They all kept telling me to just give it to them without "studying" the details of what happened to my first boy... That left me scared, alone, hopeless and helpless.
But my absolute favorite thing Dr. Snyderman said this morning were three words: "We are learning". "We are learning"...That was a really nice and encouraging statement. There was something about her tone. Softer. Less defensive. It gave me a slight impression that the deep communication chasm between many disenfranchised autism parents and mainstream doctors is closing a smidge. I know she was only referring to learning about "recovery" but maybe exploring better treatment options is next then ...who knows? An alternate vaccine schedule perhaps and more rigorous study of susceptibility/predisposition to vaccine injury??? Well... a mom can dream! But seriously, if the AAP wants to lower the rising rate of unvaccinated children in schools they need to really listen to and acknowledge the fears of ALL parents not just those who legitimately fear measles outbreaks. The stonewalling is counterproductive trust me. Meanwhile every 20 minutes a child is diagnosed...We definitely need some more Kumbaya moments!
At the Peete house over the last 10 years, we have had remarkable results with diet, enzymes and vitamin B therapy, glutathione replacement treatment, chelation, music therapy and most notably lately hyperbaric oxygen therapy (HBOT). But popular vaccine advocate Dr. Paul Offit called HBOT "quackery" (because there's no science he claims)...what a buzz kill! But we will endure that negative thinking all day long while enjoying our son's resulting explosion in language! (Check this out!)
So I think in general there has been this reluctance to "treat" autism with anything but traditional behavioral therapies. A rigid reluctance to think outside the box and treat the whole child -looking into their gastrointestinal issues for example. So many children on the spectrum are physically ill yet in my experience pediatricians seem so uncomfortable with this fact. I would love to have the chance to ask Dr. Snyderman why this is. But like the "recovery" piece that ran this morning maybe she will come around to report on the high rate of GI issues among kids on the spectrum-old news for us autism parents -but probably only when there is "real science" to back it up. Meantime: tic toc...
In the end though I am very hopeful for the future of these children and babies to come for regardless of our various vantage points and experiences we all share in the tangible dream of eradicating autism once and for all.
I too had many doctors who told me the many things my son would never do - that he does now. I too have had the same experience with my son recovering - sometimes I use the word emerged - from autism. Through the many years we worked with our son, we incorporated the Son-Rise program along with many other therapies, including the GFCF diet. Our child responded - even though we did not start anything until he was almost 6 - and I feel fortunate that our son is 16 and doing so well. I know not every family will have the same experience, although I work tirelessly to help parents find information about treatment options through our web site, Kyle's Treehouse (www.kylestreehouse.org). I don't believe in false hope - just hope.
In April, we introduced a new project called Autism151.com. Using the numbers of children diagnosed in this country today, we are collecting 150 stories to build one community of hope. I welcome any video you would like to share about your son with us on our site - to date we've collected so many amazing stories!
I am thrilled that your voice has been heard, giving voice to all of us who are "not so famous." Hopefully more medical professionals will join Nancy Snyderman and continue vocalizing their "learning." Thank you.
I don't know how to really tell you how misleading this statement is, except to remind Mr. Offit of the government reform committee hearings when congressman Burton was practically begging the CDC to just get it out of there. But the CDC said it is not that simple they have to retool to make single dose vials. What they were doing was hoping that the numbers would be able to taper down, keeping it in the vaccines. In one instance the CDC is telling the American public, we are telling the people who make our children's vaccines to make them as soon as possible with out Thimerosal.
Thanks to the freedom of information act, we know how deceitful and misleading this agency can be.
Because we have two letters
one from Glaxo smith and Kline saying we can now make DPT completely preservative "mercury" free they also explained they would have enough for the children of the US.and two other companies were going to come on line with their version of Thimerosal free. Now what is so important, is that this would have meant that 40 something percent of the mercury would have been eliminated that year. The other letter is from the CDC saying no thank you not yet,
but months later releasing a fraudulent press release that they were getting it out of there as soon as possible
Key word soon as possible
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They the CDC were afraid of the rate of chronic disease falling and the culprit would be easily found to be Thimerosal. ABC NEWS 7 within 1 day it was changed
Day # 1THE CDC SAYS IT'S TRYING TO ORDER MORE FLU SHOTS WITHOUT MERCURY FOR NEXT YEAR, BUT IS CONCERNED ABOUT SHORTAGES. HOWEVER, ABC 7 NEWS HAS OBTAINED THIS LETTER FROM ONE OF THE U.S.'s LARGEST VACCINE MANUFACTURERS STATING IT CAN MAKE ENOUGH MERCURY-FREE FLU VACCINES FOR AMERICAN CHILDREN AND PREGNANT WOMEN, BUT SO FAR IT HASN'T BEEN ORDERED.
what a difference a day makes the above statement was changed.what ever happened to freedom of the press within one day somebody high up had this changed so were
getting the truth Hmmmm!
Day # 2 THE CDC SAYS IT'S TRYING TO ORDER MORE FLU SHOTS WITHOUT MERCURY, FOR NEXT YEAR, BUT IS CONCERNED ABOUT SHORTAGES. HOWEVER, THE U.S.'S LARGEST VACCINE MANUFACTURER SAYS IT COULD MAKE MORE MERCURY-FREE VACCINES BUT IN YEARS PAST THERE HASN'T BEEN MUCH OF A DEMAND IN THE U.S.
WHERE IS THE LETTER OBTAINED BY ABC NEWS 7??? So this is freedom of the press Huh!
From a Wired article: "These children were just of another kind. You couldn't turn someone autistic or make someone not autistic. It was hardwired." From that day forward, he decided to challenge the disease model underlying most autism research. "I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different." ---http://www.wired.com/medtech/health/magazine/16-03/ff_autism?currentPage=all
One note about vaccines. Just look through this http://en.wikipedia.org/wiki/Thiomersal_controversy. Just as a starting point. That's all I'm gonna bother to say.
When Jenny McCarthy was on Oprah a long time ago- for her last book- Oprah asked is Evan cured and Jenny answered - I like to say that he is recovered because he won't really be cured ever-(this is approximate conversation- I can't remember the last words.
And talk about grim- the professianal who gqave me my son's diagnosis (and this was just a year ago) gave me the whole he will never blah blah blah- and went on for 10 minutes about not using anything except standard therapies. What was insane was that my brothers son (diagnosed 4 years before) had used just those therapies and was doing all the things she said my son would never do. So I was lucky- because I knew there was hope.
Well, I really hope your son does well. Remember, though some doctors may be wrong do not make a habit of mistrusting all of them. Did you read the Wired article? It's a interesting read if you haven't. I do not think I need to tell you this, but there are some people out there (like Jenny McCarthy) that would have you believe that autistic children are kids 'without a soul' but that is pure insulting nonsense so don't let anyone tell you that, okay? Even if an autistic child can't speak doesn't mean they don't have something to say. (Like I said I think you already know that)
So best wishes to you and your family!
My son is under a Dr.s care for lupron, but I do share your concern for long term lupron. But it is better than the alternative, catastrophic loss of brain cells. Here's what I mean.
"A Yale School of Medicine study shows for the first time that a high level of testosterone, such as
that caused by the use of steroids to increase muscle mass or for replacement therapy, can lead
to a catastrophic loss of brain cells"
The lead author was in shock when I told her mercury and aluminum was in children's vaccines.
J Harris, do you know why she was shocked about the heavy metal content ? It's because Ethyl-mercury by it's self causes apoptosis AKA neuron cell death, but when you mix aluminum to it you
turn a toxin into a super toxin with the synergy effect of the two salts mixed. J Harris I will bet you
did not know that the MSDS of THIMEROSAL states under reactivity data that aluminum and their product should not come into contact, because of the oxidative propertys, another words as you
put it so well oxidative stress. So what they at the CDC have done by accident with out even knowing
it is to set up the perfect storm for children that were susceptible. To get what their msds of Thimerosal says is possibile, mercury poisoning!
So having a child with Autism you learn how to do your own research,and stop listening to the CDC lies. BTW some of these parents deserve a honorary medical degree for all they have learned, and have tried to teach the medical community. If only they would listen! to the parents who know their children better than anybody. And stop trying to out smart GOD!
Imagine Dr.If we parents were to demand, you in the medical field stop using the purple non allergenic gloves because of a cost factor. And go back to the Latex gloves, that was endangering those in the medical profession. Your words would be something like this, some who have allergies to latex could get sick and could even die of being allergic to the latex. But Dr. it's the same argument! We do not no who is allergic to the ingredients of vaccines, and who is not. So here's where common sense comes into play, and you ere on the the side of caution. You don't give 9 vaccines on one day, 7 of which contain the mercury and learn that amount of mercury equals 32,500 ppb, especially when 200 ppb is considered liquid toxic waste, by the EPA. And then conclude that amount could not possibly hurt a child. Especially when we seem to have a subset of children that cannot process heavy metals,for example my sons glutathione level is so low he cannot stop making testosterone, And he was roid raging, before finding out he had three times the level of a normal child of testosterone. We put him on lupron, and now hes not near as aggressive.
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The low glutathione levels found in some children is very interesting and is being investigated by many labs now. This could mean that those with low GSH are susceptible to oxidative stress. However, there are *many* environmental factors which could elevate oxidative stress other than heavy metals (which are not present in the normal schedule of childhood vaccinations anymore) and this includes, pollution, irradiation, viral (the flu), bacterial, and fungal infections, and many others. There are many factors to look at here and it will take time to understand what the lower glutathione actually means (there are many possibilities).
You said, "However, there are *many* environmental factors which could elevate oxidative stress other than heavy metals (which are not present in the normal schedule of childhood vaccinations anymore) and this includes, pollution, irradiation, viral (the flu), bacterial, and fungal infections, and many others."
Please re-read what you wrote above and "think on that." Aluminum is in nearly all the vaccines in the schedule. MMR, Rotateq and Varivax, and Flu mist are all Live viral "infections" bypassing the nasopharyngeal and integumentary system and, boosted with aluminum so that "less is more."
You cannot have it one way without the other.
Thank you for your information. The problem is that, what you are saying is only partially correct. What about how quickly psychiatrists, even pediatricians will give Risperdal or concerta to a very young child with autism--prior to any actual biomedical work-up to make sure their is no brain pathology or metabolic problem, etc. etc?
I think it would be easier for parents to understand if they felt there was actually a standard of care besides a small questionaire or psychological (if even that) for a child who clearly demonstrates a regression in function that in any other population would warrant a complete medical work-up.
But, these studies need to be fast-tracked and my personal take is that dollars should be spent on biomedical rather than psychiatric studies (we don't need another study funded coroborating that autistic individuals have poor eye contact - but these studies are still being funded). The biomedical n=1 studies that we have (me included) are telling and should be guiding where there may be real advances (e.g., the oxidative stress research coming out of Stanford, the mito research coming out of Cleveland and John Hopkins, the autoimmune research coming out of the MIND Institute). Just the IAN network alone has generated TONS of ideas for scientists (funded by Autism Speaks).
Autism Speaks has been at the forefront of funding ALL sorts of studies from ALL camps within Autism research. They have done an incredible job of bringing everyone to the table.
My child was born the end of 2001 and diagnosed with ASD in the beginning of 2004 (sound familiar? Christian Hildebrand is almost on the same time frame). Autism Speaks came to in 2005 and have done incredible things. Our world is brighter and there is so much more hope now that Autism Speaks is here. Just look at their science links, it's incredible (and accessible).
I take big issue with the word "recovery," because it implies there is a typically developing child trapped somewhere or a lost child who needs to be found. In most cases, that really isn't true. They can detect autism in babies. They're finding specific gene variants linked to autism. And although some children do regress, there are usually hints in their early development that all was not well before the regression. "Recovering" is a form of denial. That fantasy baby we thought we were getting will never arrive. Focus on making life better for the child we have instead of pretending we've been given a changeling.
HBOT http://photoninthedarkness.com/?p=167 I'd rather not waste my money on it when I could save up for settled therapies. I don't buy lottery tickets with my grocery money, either.
I also take issue with the idea that arrogance from doctors is what's driving down the vaccine rate. No, I think fear-mongering among people who STILL think autism is caused by vaccines is what's driving down vaccine rates.
Finding a gene varient only tells you that you have a gene "related" to symptoms of autism. You still are not closer to understanding WHY they manifest symptoms of autism.
Recovery crazy? If you have no idea what causes something...you have no idea that you cannot "recover" or improve it. The problem is, even if you see recovery, if you have no idea what caused it, there is no reason to assume it will never come back.
Nicole Beurkens, M.Ed.
Director
Horizons Developmental Remediation Center
www.horizonsdrc.com
I will keep my fingers crossed for you!
I also have a child, almost 14 now, who received a gloomy prognosis. The "good news" was that she appeared cognitively competent, should eventually get some stilted speech, be able to hold some kind of job. Now she's fully mainstreamed at a competitive junior high where she's an honor-roll student, and is college-bound. I don't use the word "recovery," but she's doing great.
However, she's had neither biomedical intervention nor formal ABA. When she was younger I knew people who would say I should have her infused with secretin, then a cutting-edge biomed treatment, and others who insisted she must have full-time ABA. Instead of a child who's damaged, we've seen her as a child who learns differently, and we've been fortunate to reach her so that we could help her do so. She has worked really hard.
I wouldn't argue with anyone who said biomed worked for them, but I'm frustrated when it's made to sound like THE solution for all autism. Cases like ours are clearly different, and yet as true and valid as yours. It seems increasingly likely to me that there are multiple causes for the collection of symptoms we call "autism." I wish I didn't feel that the vocal advocacy for vaccine injuries and biomedical interventions sometimes shouts out different experiences like ours.
After both twins were diagnosed with autism, I learned that thimerosal is not only still in flu shots, but also in tetanus boosters. And, according to the CDC today, thimerosal is STILL IN OTHER CHILDHOOD VACCINES in "trace" amounts. The CDC suggests that "trace" amounts are safe---yet the cumulative total of "trace" amounts whenever an infant receives multiple shots at once can easily exceed the EPA's exposure limits for a 150 lb. adult---much less an infant.
The misstatement that thimerosal is out of vaccines is reiterated every time the media talks about vaccines/autism. Sadly, this fabrication was constantly in the news when my twins were born, it was reitereated by my pediatrician, and it led me to make misinformed vaccination decisions for my babies.
I am not aniti-vaccine. But I am absolutely PRO-TRUTH. Parents have the right to make HONESTLY INFORMED decisions based on weighing the TRUE risks/benefits to their child about all medical procedures, including vaccinations.
I am one of those moms that can't afford to give my son the treatments. So, I am out there trying to raise funds, not only for my kiddo but for all of the kiddos that need this so very much.
http://www.thepetitionsite.com/1/Nickelback4autism
I hope to help out in any way I can.
Many of us have been waiting over a decade for you scientists to get on the stick. You're still trying to decide whether or not there is an increase in ASD or you are just better at diagnosing!