Video of the Press Conference discussing possible link between autism and vaccines. Worth watching, regardless of your opinion on the subject. We all need to be educated consumers and be willing to listen to all sides of the story when it comes to the safety of our children...
Q&A about the results of the investigation, as well as link to original research paper...
High Rates of Autism Found in Federal Vaccine Injury Program: Study Says More Answers Needed
Showing posts with label research. Show all posts
Showing posts with label research. Show all posts
Tuesday, May 10, 2011
Link Between Vaccines and Autism? Press Conference Today, 5/10/11, at noon EST...
Regardless of your beliefs about a possible link between autism and vaccines, please tune in to the live webcast today from the steps of the US Supreme Court, streaming live at the following website:
http://www.ustream.tv/channel/ebcala
Here is some more information regarding what will be discussed, thanks to Ginger Taylor and her blog:
-------------------------------------------------------------------------------------
In 2008 Johns Hopkins Neurologist Jon Poling went public with the news that his daughter Hannah, who regressed into autism following her 18 month vaccines, was paid by the Vaccine Injury Compensation Program.
CDC, in a public statement, claimed that the Hannah Poling case was "rare" and should not be generalized to "normal" children. Days after the Poling's announcement, the Hiatt family also went public with their VICP ruling that their autistic daughter Madison was also a vaccine injury victim. Then the Banks family went public. Finally, CBS News reported finding 7 more vaccine/autism cases that dated back to 1991, the very beginning of the autism epidemic.
So the autism community wanted to know... just how many cases of autism have been paid by the program that was established in 1986, how "rare" is this, and what did the government know about vaccine injury and autism causation that they were not telling the public and the medical community. After being questioned by a journalist, the department of HHS that oversees the VICP issued the following statement on whether this was an admission that the government was now paying children for vaccine induced autism. The "official response" from HRSA:
"From: Bowman, David (HRSA) [mailto:DBowman@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'dkirby@nyc.rr.com'
Subject: HRSA Statement
David,
In response to your most recent inquiry, HRSA has the following
statement:
The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that autism was actually
caused by vaccines. We have compensated cases in which children
exhibited an encephalopathy, or general brain disease. Encephalopathy
may be accompanied by a medical progression of an array of symptoms
including autistic behavior, autism, or seizures.
Some children who have been compensated for vaccine injuries may have
shown signs of autism before the decision to compensate, or may
ultimately end up with autism or autistic symptoms, but we do not track
cases on this basis.
Regards,
David Bowman
Office of Communications
Health Resources and Services Administration
301-443-3376"
This admission of a link to autism, and the disturbing revelation that the government was not even planning on counting how many autism cases it had paid from the vaccine injury fund, made it clear that HHS's claims of concern for the rise in autism rates and concern for vaccine safety were less than sincere, and that it was time for an investigation into the VICP to find out how many of the cases of vaccine induced encephalopathy (brain damage) resulted in "autistic behavior, autistic symptoms or autism" as Bowman had referenced.
[Today] the results of this two year investigation will be revealed and we will get a better look into what the government knows about vaccine/autism causation and how long they have known it.
-----------------------------------------------------------------------------------
My own personal opinion about the possible link between autism and vaccines:
I have a daughter with autism and I do NOT believe vaccines caused her autism. However, I believe, like many others out there, that there could be a link between some children who are susceptible to autism genetically and just need an environmental trigger, such as an ingredient in vaccines, that causes the autism to come out. Just like some of us are more susceptible to diabetes or cancer. Not everyone who gets vaccinated is going to get autism, and not everyone who doesn't get vaccinated is not going to be autistic. It is just if you are one of the "unlucky" susceptible people, an environmental trigger could push you over the edge. People who don't have kids with autism or who aren't directly affected by it need to stop judging others who live with this in our lives on a daily basis. And open up your ears. Not everyone is anti-vaccine, but pro-safer vaccines, and pro-research. And there has NEVER been a study that PROVED there was no link, there just haven't been publicly released studies that proved there were (although I am a believer that there is a lot of data out there showing the government, Big Pharma and CDC know far more than they let on).
"A country that requires all children to receive a product - no matter how beneficial - knowing that some children will die and others' lives will be destroyed by the use of that product, risks losing all moral authority." -- James Turner, JD
http://www.ustream.tv/channel/ebcala
Here is some more information regarding what will be discussed, thanks to Ginger Taylor and her blog:
-------------------------------------------------------------------------------------
In 2008 Johns Hopkins Neurologist Jon Poling went public with the news that his daughter Hannah, who regressed into autism following her 18 month vaccines, was paid by the Vaccine Injury Compensation Program.
CDC, in a public statement, claimed that the Hannah Poling case was "rare" and should not be generalized to "normal" children. Days after the Poling's announcement, the Hiatt family also went public with their VICP ruling that their autistic daughter Madison was also a vaccine injury victim. Then the Banks family went public. Finally, CBS News reported finding 7 more vaccine/autism cases that dated back to 1991, the very beginning of the autism epidemic.
So the autism community wanted to know... just how many cases of autism have been paid by the program that was established in 1986, how "rare" is this, and what did the government know about vaccine injury and autism causation that they were not telling the public and the medical community. After being questioned by a journalist, the department of HHS that oversees the VICP issued the following statement on whether this was an admission that the government was now paying children for vaccine induced autism. The "official response" from HRSA:
"From: Bowman, David (HRSA) [mailto:DBowman@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'dkirby@nyc.rr.com'
Subject: HRSA Statement
David,
In response to your most recent inquiry, HRSA has the following
statement:
The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that autism was actually
caused by vaccines. We have compensated cases in which children
exhibited an encephalopathy, or general brain disease. Encephalopathy
may be accompanied by a medical progression of an array of symptoms
including autistic behavior, autism, or seizures.
Some children who have been compensated for vaccine injuries may have
shown signs of autism before the decision to compensate, or may
ultimately end up with autism or autistic symptoms, but we do not track
cases on this basis.
Regards,
David Bowman
Office of Communications
Health Resources and Services Administration
301-443-3376"
This admission of a link to autism, and the disturbing revelation that the government was not even planning on counting how many autism cases it had paid from the vaccine injury fund, made it clear that HHS's claims of concern for the rise in autism rates and concern for vaccine safety were less than sincere, and that it was time for an investigation into the VICP to find out how many of the cases of vaccine induced encephalopathy (brain damage) resulted in "autistic behavior, autistic symptoms or autism" as Bowman had referenced.
[Today] the results of this two year investigation will be revealed and we will get a better look into what the government knows about vaccine/autism causation and how long they have known it.
-----------------------------------------------------------------------------------
My own personal opinion about the possible link between autism and vaccines:
I have a daughter with autism and I do NOT believe vaccines caused her autism. However, I believe, like many others out there, that there could be a link between some children who are susceptible to autism genetically and just need an environmental trigger, such as an ingredient in vaccines, that causes the autism to come out. Just like some of us are more susceptible to diabetes or cancer. Not everyone who gets vaccinated is going to get autism, and not everyone who doesn't get vaccinated is not going to be autistic. It is just if you are one of the "unlucky" susceptible people, an environmental trigger could push you over the edge. People who don't have kids with autism or who aren't directly affected by it need to stop judging others who live with this in our lives on a daily basis. And open up your ears. Not everyone is anti-vaccine, but pro-safer vaccines, and pro-research. And there has NEVER been a study that PROVED there was no link, there just haven't been publicly released studies that proved there were (although I am a believer that there is a lot of data out there showing the government, Big Pharma and CDC know far more than they let on).
"A country that requires all children to receive a product - no matter how beneficial - knowing that some children will die and others' lives will be destroyed by the use of that product, risks losing all moral authority." -- James Turner, JD
Friday, June 4, 2010
Oh, My, How Things Have Changed...
It has been almost 2 months since my last post, but not due to lack of things to talk about. On the contrary, there is far too much to even begin to describe what has been happening in our lives lately. Unfortunately, I do not have a lot of time right now to give a lot of details, but I will do my best to expand on this at a later date. I just wanted to share a brief synopsis since many of you have been inquiring on what has been going on with Katelyn...
Katelyn's presentation of symptoms has really changed drastically over the last few months. Every professional who has come in contact with her recently has agreed that she no longer seems to be presenting like autism, but instead like a psychiatric disorder. Our family now believes that she is experiencing some sort of hallucinations, including command hallucinations that prevent her from eating, make her hurt herself and others, and more. While she is far too young to be given a diagnosis, pretty much all of her symptoms meet criteria for early child-onset schizophrenia. It is extremely rare for a child of her age to present with schizophrenia, but after what we have witnessed over the last few months, we are convinced that she has some sort of psychosis. And like I always say, just because something is extremely rare does not mean it doesn't exist. I don't care if the odds are 1 in a billion...if you are that 1 person, statistics have no meaning.
We are in the midst of trying to advocate for our daughter as we always have, but now we are facing many brick walls since we are entering the realm of mental illness. While autism is gaining more and more awareness and supports, unfortunately there are not many resources for childhood mental illness. Despite being kicked when we are down in what appears to be an uphill battle, we will not let this stop us from continuing to fight to get help for our beautiful little girl. Through no fault of her own, or anyone else's for that matter, Katelyn was dealt a difficult hand in life, but we will not sit back and watch her suffer. It may take years, and many bumps and bruises along the way, but we have faith that we will eventually find answers and appropriate treatment for what is causing our daughter so much pain.
Thank you all for your support throughout this extremely difficult time. Whenever I find the time (so probably never, haha), I will be revamping this blog since we most likely are facing something other than autism. However, I will continue to support autism research and awareness.
Katelyn's presentation of symptoms has really changed drastically over the last few months. Every professional who has come in contact with her recently has agreed that she no longer seems to be presenting like autism, but instead like a psychiatric disorder. Our family now believes that she is experiencing some sort of hallucinations, including command hallucinations that prevent her from eating, make her hurt herself and others, and more. While she is far too young to be given a diagnosis, pretty much all of her symptoms meet criteria for early child-onset schizophrenia. It is extremely rare for a child of her age to present with schizophrenia, but after what we have witnessed over the last few months, we are convinced that she has some sort of psychosis. And like I always say, just because something is extremely rare does not mean it doesn't exist. I don't care if the odds are 1 in a billion...if you are that 1 person, statistics have no meaning.
We are in the midst of trying to advocate for our daughter as we always have, but now we are facing many brick walls since we are entering the realm of mental illness. While autism is gaining more and more awareness and supports, unfortunately there are not many resources for childhood mental illness. Despite being kicked when we are down in what appears to be an uphill battle, we will not let this stop us from continuing to fight to get help for our beautiful little girl. Through no fault of her own, or anyone else's for that matter, Katelyn was dealt a difficult hand in life, but we will not sit back and watch her suffer. It may take years, and many bumps and bruises along the way, but we have faith that we will eventually find answers and appropriate treatment for what is causing our daughter so much pain.
Thank you all for your support throughout this extremely difficult time. Whenever I find the time (so probably never, haha), I will be revamping this blog since we most likely are facing something other than autism. However, I will continue to support autism research and awareness.
Sunday, October 11, 2009
Walk Now for Autism - only ONE week left!
Please join Katelyn and her family and friends in our fight to make a difference in the lives of the more than 1 million Americans living with autism today.Katelyn was diagnosed with autism in January of 2009 at the age of 30 months. With the help of her dedicated family, friends, and therapists, she is making tremendous strides.
It is our hope that, through vital research conducted by organizations such as Autism Speaks, we can learn more about the causes, treatments, and prevention of autism, while also raising public awareness.
To do our part, we are participating in Walk Now for Autism. We are not only walking in honor of our beloved daughter, we are walking for all who are or will be affected by autism, whether they be family members, friends, or people living "on the spectrum."
To make a donation (tax deductible) to Team Giraffe’s Song, you may either:
1) Visit our Team webpage by clicking here.
2) Use PayPal. Our Team PayPal account is giraffessong@gmail.com.
2) Use PayPal. Our Team PayPal account is giraffessong@gmail.com.
Thank you for taking an important step in the fight against autism!
Donations are tax deductible to the fullest extent allowed by law.
Autism Speaks 501 (C)(3) Tax Id #: 20-2329938
Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly.
Wednesday, April 29, 2009
"Autism Genes" Identified...
Yesterday, researchers declared that two studies have led them to the discovery of certain genes that appear to be associated with autism. It is believed that this genetic link may be responsible for roughly 15% of cases of autism spectrum disorders.
This is a remarkable breakthrough, as it will hopefully allow scientists to learn more about the biological causes of autism and also to develop effective treatment options.
I do believe that some cases of autism are genetic (how can it not be when you have some families with multiple kids on the spectrum), but I also believe that there are environmental factors that "trigger" autism in some children (gluten/casein intolerance/allergy and other food sensitivities, vaccine ingredients, leaky gut syndrome, etc.). This is evident in the fact that many children with autism benefit greatly from various biomedical interventions, such as the GFCF diet (gluten-free, casein-free) and chelation (detoxification of metals from the body). I do hope that they continue to research the environmental causes as well.
This quote from Dr. Hakonarson, the leader of the research study, sums up my feelings on this subject:
"There are going to be many genes involved in causing autism," says Dr. Hakonarson. "In most cases, it’s likely that each gene contributes a small amount of risk, and interacts with other genes and environmental factors to trigger the onset of disease."
This is a remarkable breakthrough, as it will hopefully allow scientists to learn more about the biological causes of autism and also to develop effective treatment options.
I do believe that some cases of autism are genetic (how can it not be when you have some families with multiple kids on the spectrum), but I also believe that there are environmental factors that "trigger" autism in some children (gluten/casein intolerance/allergy and other food sensitivities, vaccine ingredients, leaky gut syndrome, etc.). This is evident in the fact that many children with autism benefit greatly from various biomedical interventions, such as the GFCF diet (gluten-free, casein-free) and chelation (detoxification of metals from the body). I do hope that they continue to research the environmental causes as well.
This quote from Dr. Hakonarson, the leader of the research study, sums up my feelings on this subject:
"There are going to be many genes involved in causing autism," says Dr. Hakonarson. "In most cases, it’s likely that each gene contributes a small amount of risk, and interacts with other genes and environmental factors to trigger the onset of disease."
Here is a video, followed by some related articles, regarding this recent discovery:
Risk of Autism Tied to Genes that Influence Brain Cell Connections
Autism Genes Discovered; Help Shape Connections Among Brain Cells
What the Autism Gene Finding Means for Parents
Thursday, April 2, 2009
Happy World Autism Awareness Day!
What is World Autism Awareness Day?
"World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe. By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope."
Facts from the Autism Speaks Website:
Did you know…
1 in 150 children is diagnosed with autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism
The Red Flags of Autism...
(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.) In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:
No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age
Click here to view the World Autism Awareness Day Brochure.
What are you going to do to spread awareness about autism?
Friday, November 14, 2008
Now That I Know, I Finally See...
I never really knew what the autism "spectrum" meant. When I thought of autism, like most people, I had a certain image in my head of a child rocking back and forth, banging his head, completely nonverbal, having no social skills whatsoever. Many people also think of Rainman; however, he is definitely NOT a typical example of what autism is.
Ever since she was a baby, I always felt like something was "different," especially after we thought she was deaf at 4 months old. She also was delayed in reaching some milestones. She didn't walk independently until 16 months, although she had taken a few steps before her first birthday. She also started talking late, although she "jargonized" and "sang" constantly (she still does!). She was saying Mama and Dada, but not always in the right context...just babbling mostly. She had said "kit" for kitty and had said "car" when we would get in the car, but then she stopped saying both of those words. Her pediatrician told us at her 18-month appt to just "wait it out" until she was 2 years old. She didn't start really saying words until she was 22 months or so, with the help of Early Intervention. She also didn't point at objects until she was close to 2 years old. Still, we never suspected anything other than a speech delay.
Fast forward to October of 2008. Katelyn had her 6-month evaluation for Early Intervention. They noticed that she sometimes took a little longer to process what was asked of her, but once she got it, she sure got it. They suggested it could be an auditory processing delay and that we may want to get her evaluated further. I casually mentioned autism (not even sure why) and they said they didn't think so, but it could be a possibility, so it would be best to get her evaluated.
That night, I went online and started googling "auditory processing delay" and ended up stumbling onto some autism information. I also found an online test on http://www.childbrain.org/, which suggested that she may have mild PDD (pervasive developmental disorder, which essentially means that she would be on the autism "spectrum"). I then began researching more and more and discovered that she had many symptoms of autism. I was shocked. It became so obvious to me and my husband that she had certain behaviors/characteristics of autism.
How was it that we never noticed this before?????? We just didn't know what to look for.
Now that we know, we finally see.
Ever since she was a baby, I always felt like something was "different," especially after we thought she was deaf at 4 months old. She also was delayed in reaching some milestones. She didn't walk independently until 16 months, although she had taken a few steps before her first birthday. She also started talking late, although she "jargonized" and "sang" constantly (she still does!). She was saying Mama and Dada, but not always in the right context...just babbling mostly. She had said "kit" for kitty and had said "car" when we would get in the car, but then she stopped saying both of those words. Her pediatrician told us at her 18-month appt to just "wait it out" until she was 2 years old. She didn't start really saying words until she was 22 months or so, with the help of Early Intervention. She also didn't point at objects until she was close to 2 years old. Still, we never suspected anything other than a speech delay.
Fast forward to October of 2008. Katelyn had her 6-month evaluation for Early Intervention. They noticed that she sometimes took a little longer to process what was asked of her, but once she got it, she sure got it. They suggested it could be an auditory processing delay and that we may want to get her evaluated further. I casually mentioned autism (not even sure why) and they said they didn't think so, but it could be a possibility, so it would be best to get her evaluated.
That night, I went online and started googling "auditory processing delay" and ended up stumbling onto some autism information. I also found an online test on http://www.childbrain.org/, which suggested that she may have mild PDD (pervasive developmental disorder, which essentially means that she would be on the autism "spectrum"). I then began researching more and more and discovered that she had many symptoms of autism. I was shocked. It became so obvious to me and my husband that she had certain behaviors/characteristics of autism.
How was it that we never noticed this before?????? We just didn't know what to look for.
Now that we know, we finally see.
Subscribe to:
Posts (Atom)
