The Not So Simple Truth

How many times can one heart break in a lifetime...

2011-06-03T19:53:00.000-05:00

Lets be clear about one thing. I understand that things are probably not as bad as I feel like they are right now. I am grateful for what I have with KC. I am very aware of how lucky I am that he does as well as he does. But I can simultaneously feel lucky in that way, while I also break inside in other ways.

KC had an appointment today with his Neuro-psychiatrist.

Dr. NP (short for Dr. Neuro-psych) told me at our last visit that while Dr. Neuro may have run out of options to treat the seizures, we have only just begun opening up Dr. NP's bag of tricks. We have many more options. I felt great hearing this! And, as it turned out, the slight med tweak that we did at that appointment bought us a month or so of the best progress we have seen yet with KC. Huge language burst, calmness, etc. All hitting, throwing, and self-injurious behavior ceased. He began coming when called, consistently!! It was nothing short of amazing. My Mom took KC to the Zoo and described it, with tears of joy in her eyes, as feeling like she was taking her typical grandson to the Zoo. He stayed near her with no leash or stroller, waited in line, no meltdowns. It was a beautiful thing.

I knew the whole time that this would not likely last. I tried like hell not to get used to it. I expected some back sliding and felt that I was safely guarding myself. I was wrong. What I did not prepare myself for was for KC to suddenly loose all of his new skills, and behavior and end up further back than he was before we started the risperadol. Pretty much overnight. For the last three weeks I have been wracking my brain trying to understand how this could have happened. I am trying everything I can think of to help him get back on track.

I emailed Dr. NP, who responded with something like "Karen I am sure we can figure out what is going on and find a way to help KC. Come see me". So, I made the appointment! I went in today hoping against hope that he was right. I felt almost desperate. But hopeful.

The first hit I took was the fact that Dr. NP was NOT EVEN IN TODAY. He pawned us off on some doctor I have never even met! We did see the resident prior to seeing Dr. Whoeverthefuckheis. She was kind, and gentle. We discussed some OT options with regards to stimulating KC so that he will not continue to claw at his eyes constantly. We need to do something before he does serious damage to his eyes. As it is, each night his eyes are red, swollen and watery from constant poking. She had a few suggestions about possibly putting KC on an anti-depressant to try to help with behaviors. We talked for quite a while, but she never really said why this happened in the first place, so I asked. Teary eyed, and desperate. "Why is this happening, and how can we keep it from continuing? Her answer? It was in a soft, kind voice:

"Its just the nature of the beast" She later went on to say "These types of emotional issues with be lifelong for KC. The trick is figuring out how to manage it."

And it felt like a blow to the chest.

I have been told more times than I would like to remember, that this is just how it is with kids who have IS and autism. And it kills me. Because I have seen him when he is not like this. I get these glimpses of a little boy who does not have to struggle for every fucking thing in his life. I get a view of a little boy who can function well, and can be happy. So why the fuck should I have to accept the fact that this is just how it is?! Its NOT. It can't be. After all these years of fighting, it can't be that this is how he is going to be.

And honestly, I don't think she meant it how I am taking it. I think she meant that he will always struggle with it, but eventually he will figure out how to regulate it better. But she doesn't know for sure. No one does. Maybe it was the kind, almost sad look she gave me when I so desperately asked her how we fix this. Like a doctor telling an unsuspecting patient that their disease is terminal. His isn't, but right now it feels that way to me.

Many other doctors have told me the opposite...he WILL be ok. He is smart, he has a lot of advantages that other kids in his boat don't have. But what I have been seeing in him lately is scary. He is getting worse. He is falling further and further behind other kids his age. He has never been close anyway, developmentally, but now it is way more obvious. Some behaviors are likened to a 18 month old, some more like a 2 year old. He will be 5 in October. And yea, I get it that in some ways I am lucky to have that. But I got to see him progress SO much, and the sting of seeing it all taken away is so raw.

I think that in some ways, if he was just always worse off, it might be easier. Only in some ways. Obviously in other ways it would be harder. But this here is a special kind of hell. Because I am constantly shown how much better he could be doing, only to have it ripped away. Every. Fucking. Time. I don't know how I can go on hoping, believing. It hurts so bad.

I am terrified. I am scared that this is always how it will be. He will stagnate around 2 years old and never get better. Or, even worse, he will progress and loose it all. Time and time again. What if nothing works? What if he can't ever be independent? Again, typical things with IS kids, but all these years of having the possibility of it not being this way being dangled in front of me. Its cruel. Life can be so fucking cruel sometimes. For him, my sweet baby. His own body betrays him constantly and he has to suffer the consequences. He is such a good person. He doesn't deserve this. And for me. This pain I feel right now, I have felt many times before, but it never gets easier. It does come a lot less often than it used to, so that is good. But it hurts just as bad when it comes. Words (even though I typed a lot of them) don't do justice to how sad and scared I feel right now. I hate it. No one can promise me that he will be ok. So, sometimes I just have to take a long hard look at the fact that things just might not turn out ok. Its a hard thing for a mother to deal with.

This despair I feel right now won't last. I will work through this pain and go back to dealing with things more rationally. I just have to process it in order to let it go. It just hit me hard this time because I really wasn't expecting it. One thing that will never change, is how much I love my son. He is everything that matters to me in this world. I read a quote today that seems so fitting : "This world was never meant for one as beautiful as you" And its true. Its not him that wasn't meant for this world, its this world that wasn't meant for him. But he is here, and he's mine. And I will fight until the day I die to give him the life that he so richly deserves.

2011-05-17T18:07:00.000-05:00

I recently read an article, and I wanted to sum it up and give you some main points, but I am falling short and feel like you need to get it directly from the horses mouth. I will post the parts that I find importnat, and I will link the entire article so you can read if you choose.. I would specifically pay attention to the part that talks about how the Vaccine court works...how quietly it works.

Judy Converse, MPH RD LD, May 10, 2011 writes...

When we have our babies, we feel safe because we have vaccines. We regard them as no less than life-granting elixirs of modern times, the dividing line between a safe and secure health trajectory for our kids, and certain death from diseases of yore.
But cracks in that comfortable veneer have definitely formed, giving a sense of the inevitable to what was once inconceivable. Have we tapped out the usefulness of vaccines? Are they more harm than good, as we now use them?
And now this. A cluster of parents who managed to survive Vaccine Court – a little known corner of hell reserved for those whose children are injured or killed by vaccinations – have banded together to speak out. Vaccine Court is where you end up if you know enough to file a claim for a child’s vaccine injury. Since the pharmaceutical industry won itself protections against any liability for injury law suits in the 1980s, and since the Supreme Court solidified this protection by removing parents’ rights to pursue civil court appeals just this year, families are left to make claims with the government when the unthinkable happens to a baby or child who is dutifully submitted for shots. For twenty-five years, a tax added to the sale of each vaccine has paid into a fund to take care of these children. That is, if parents know of and pursue their rights, and if they prevail in this court system.
For years, at the same time we’ve heard assurances that vaccines are safe, the federal government’s Vaccine Court has quietly paid millions to families whose children suffered devastating brain injuries from routine shots. “Quiet” is the operative word here, as parent Sarah Bridges, who holds a PhD in psychology, explains: She was advised “very routinely” by her lawyer to “be careful talking about this” lest her son’s custodial funds evaporate. At risk of losing their hard won compensation – these cases have been gagged for a quarter century – parents are now speaking out, and revealing that their children were the canaries in the coalmine. Ms. Bridges’ son for example, who is now seventeen years old, has mental retardation, epilepsy, and autism thanks to infant vaccinations, and lives in a care home wearing a diaper and a helmet thanks to the compensation program paying for it all.
This is bad news for anyone who feels unsafe without vaccines.
I don’t feel afraid without vaccines. Even with a master’s degree in public health, and years of university training in health sciences, I am relieved to see what may be a tipping point here.

Meanwhile, more integrative medicine strategies evolve every year – tools that rely less on drugs and surgery and more on whole organic foods, reduced toxins, nutraceutical strategies, or other modalities. Witness the success of vitamin D in preventing and shortening course of flu, for one small example out of hundreds, that illuminate the potential of pharmaceutical and toxin-free strategies to minimize infectious disease.
These strategies tend to be unpopular with the medical press and our government health agencies. What that means is that if the bloom is off the vaccine rose, they are going to be the last to admit it – but that’s another blog. In the meantime, be a smart health consumer for your own babies and kids. Read alternative views on vaccination, tap providers trained to engage nutrition-focused tools for healthy immune function. If you want to opt out of the vaccine schedule in whole or in part, you can
- Check your state’s mechanisms for vaccine choice by clicking here.
- Switch to a family practice physician, osteopathic doctor (DO) or a naturopath (ND), if your pediatrician is coercive about vaccines beyond your comfort level.
- Read Special Needs Kids Go Pharm-Free: Nutrition-Focused Tools To Minimize Meds and Maximize Health and Well Being, even if your kid isn’t diagnosed with a special need. See the chapter on avoiding infections, and the section on working with providers to help you through infections when they occur.
We all owe a debt to the 83 Canaries, the children the government did not want you to know about who have been thrown under the vaccine bus. Their parents are speaking out, and according to Mary Holland at the Elizabeth Birth Center for Autism Law and Advocacy (EBCALA), it’s just the tip of the iceberg.

Share|

Visit http://nutritioncare.net/blog/2011/05/10/vaccines-83-canaries-obsolete/

To get the rest of the article.

Book Club

2011-05-02T18:55:00.001-05:00

In an effort to try to be a well rounded blogger, I am trying to think of ideas for weekly features. One idea I had, is to post book reviews. Reading is such an awesome way to escape the pressures of raising a special needs child, or any child for that matter.

I recently picked up a book that was not exactly my type, but once I started it I couldn't put it down! Its called Time of My Life by Allison Winn Scotch. It is the story of a woman who has the picture perfect life. Successfull husband, healthy daughter, and a nice home. But she can't stop wondering....what if. What if she stayed with Jackson, her passionate ex boyfriend, instead of marrying predictable Henry.

Honestly, I can relate. Don't get me wrong, I would not change the path that led me to the life I have now, but don't ya ever...wonder?

Jillian does. And before she knows what is happening, she is back in her IKEA furnished apartment, with Jackson. Each decision she makes in her "new life" sets on a trajectory that mirriors neither her memories or her imagination.

Taken from the book cover:

Time of My Life is a fabulous, madcap read, but don't be fooled. Allision Scotch's narrator is wrestling with some tough issues: How do I find my place in the world? Can I become a wife and a mother without loosing myself? Would I have been happier if I had chosen another path?

I think these are questions that, if we are being honest with ourselves, we have all at least considered. Check out this story, and when you are done, let me know how you would answer the questions that Jillian asks herself in this book, and if your perspective has changed after reading...

http://www.amazon.com/Time-Life-Allison-Winn-Scotch/dp/0307408574

Fun, seizures, and other significant happenings...

2011-04-25T20:43:00.001-05:00

I have learned that a weekend of fun with seizures, is still a weekend of fun! We took KC to Key Lime Cove, which is a resort near Gurnee that has an indoor water park. Let me rephrase that...a HUGE indoor water park, which KC happened to LOVE!!

Lets rewind a bit to before we even got there. We told KC about a week in advance that we were going to to the waterpark and he got ridicilously excited .

But he was able to understand that we were not going today, and that we would have to wait until next week. He understood!! This is huge. We used to have to wait until it was time to leave to tell him anything, otherwise he would flip out.

Instead, we got to experience a week of excitement with him. Watching the video on the computer of what it looks like, counting down days, etc. Until that day finally arrived, and the first thing he said is "today means key lime cove?" It felt so good to be able to say yes!

He loved the big waterslides, and as far as KC is concerned, the bigger and faster, the better.

The Lazy river was fun too...

We all had a blast, KC, me, Ree (Grandma) and Uncle Kevin. When KC made a weird face, or funny movements, we all tried to avoid eye contact with each other. We didn't want to notice the seizures during all the fun.

But they were there, in overdrive. Mostly due to overstimulation, I think. But I tried not to worry because our hearts, each one of them, needed this break from the daily heartbreak. And because I think if KC could communicate this to us, he would tell us he wants to have fun and forget about the seizures for now. Fun now, worry later.

So that is what we did.

In the midst of the fun we were having, we ran into the Easter Bunny hanging out in our hotel! KC loves the Easter Bunny and got his much anticipated high five from him.

We all slept in one hotel room, which made KC so happy. The first thing he said when he woke up was "What day it is today?" Ree-"Its Sunday" KC, in a sweet, just woke up but super excited voice "Its a my uncle Kevin here day?" Uncle Kevin-heart melts and he opens his bedcovers for KC to crawl in :)

After more swimming fun, and a long ride home I realized that the seizures would be here on Monday, but those moments would be memories not to be had again. So I am glad I decided that a weekend of fun and seizures is still a weekend of great fun!

See you next year (hopefully) Key Lime Cove. We will be there, and seizures or no seizures, we will be ready for a great time!

Why the Debate Continues...

2011-04-17T17:25:00.000-05:00

The Autism-Vaccine Debate: Why It Won't Go Away

David Kirby-Author/Journalist

I have been speaking to young parents in my neighborhood of Park Slope, Brooklyn lately about vaccines and autism, which science and the media have once again pronounced as completely debunked for what I believe is now the sixth or seventh time.
These are highly educated, affluent and politically progressive people -- doctors, lawyers, entrepreneurs, writers and other successful professionals. And like half of the American population in one poll, many of my neighbors (though certainly not all) say that there is, or may be, an association between autism and the current U.S. vaccine schedule.
Although some Park Slope parents refuse to vaccinate their children at all - an unwise and dangerous choice in my opinion -- the vast majority makes sure their kids get immunized; although many do so on a schedule worked out with their pediatrician.
In general, it is the most highly educated parents who are now eschewing the CDC schedule and vaccinating their children at a different pace. In one recent presentation of data, for example, mothers with masters degrees were significantly more likely to forego the Hepatitis B vaccine birth dose than mothers with an 8th grade education.

Why do so many educated, successful parents still believe that the current vaccine schedule can hurt a small percentage of susceptible kids, and that some of those injuries might result in an autism spectrum disorder (ASD)? Despite all of the population studies showing no link, high-profile court cases that went against parents, insistence of omniscience by health officials and the public mauling of Andrew Wakefield, I don't think that many people around here have changed their minds.
That's because evidence of a vaccine-autism link did not come to them via a 12-year-old study published in a British medical journal, nor from Hollywood celebrities: Not very many had heard of Wakefield until recently.
Some of these parents actually keep up with the science, including a new review of autism studies in the Journal of Immunotoxicology which concludes: "Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination."
Some of their evidence also comes from life -- from friends, family and business associates whose children had an adverse vaccine reaction, got sick, stopped talking and never recovered.
It's a fact that many children with ASD regressed following normal development just as they were receiving multiple vaccines at regular doctor visits. Health officials say the timing is entirely coincidental.

Regression usually occurs between 12 and 24 months, though one study found that some children show signs of autism as early as six months, but never before that age.
By six months of age, most U.S. children have received about 18 inoculations containing 24 vaccines against nine diseases. Over the next two years or so, they will receive another nine shots containing 14 vaccines against 12 diseases.
So whether a child regresses at six months, or 18 months, the tragedy happens during a period of intensive vaccination. In many cases, parents report that the child had an abnormal reaction after being vaccinated (seizures, spiking-fevers, diarrhea, lethargy, high-pitched screaming and/or other symptoms).
The temporal association might be coincidental, but for many autism parents, now tens of thousands in number (but certainly not all parents), there is nothing to dissuade them: they are certain that vaccines harmed their kids. I have spoken with thousands of them personally. Their stories of regression are hauntingly similar, describing a childhood catastrophe that was virtually unheard of when I was growing up.
These parents, and grandparents, naturally share their stories with brothers, sisters, friends, coworkers and the media, and before long half the population is questioning authorities who insist that there is zero chance of any association whatsoever.
Every year, thousands of new parents go through the same ordeal, which is why belief in a link is probably going up, not down. Sadly, this will continue for years to come as more and more parents join the ranks of the devastated but convinced. There is nothing that anyone can do or say -- not you, not me, not any scientist on earth -- until definitive proof of all the true causes of autism is found. But that appears to be years, or decades away.
Parents who say the vaccine-autism link has not been debunked are, like me, hardly "anti-vaccine." Why on earth would anyone not want to protect children from dangerous diseases? That is the epithet hurled upon most of them anyway. And it's what people will say about me as well, even though, as I said, I think parents should vaccinate their kids.
What's curious is the selective use of the "anti-vaccine" accusation. Few people call Dr. Bernadine Healy, former head of the NIH, "anti-vaccine" for not ruling out a possible link, and calling for the study of the children who actually got sick.
I have never heard it used against Temple Grandin, who said there should be "a closer evaluation" of vaccines and autism and echoed Dr. Healy by adding that, "These children should be carefully studied to determine when and why they lost language, and if factors such as vaccines and genetic predisposition may be causes."
And I've never heard it used against the many Somali parents of children with autism living in Minneapolis who said they are convinced that vaccines played a role, and will be telling that to CDC and NIH researchers who are trying to find out why the rate among Somali children is reportedly about 1-in-28 in that city.
Most parents in Park Slope are pro-vaccine, which is why they vaccinate their kids. They know the answer to the question, "Could vaccines be involved in some autism cases?" is not "Stop vaccinating all children now."
Instead, like me, they believe that more children today are more susceptible to vaccine injury and other environmental triggers, thanks to toxins such as heavy metals, air pollution, pesticides and a universe of endocrine disruptors unleashed into the environment. Other risk factors might be at play, such as vitamin D deficiency, parental age, closely-spaced births, caesarian births or even the stress of everyday life.
Such factors, both pre- and post-natal, might harm mitochondria, damage DNA and potentially result in immune and autoimmune disorders. These problems could then, in turn, increase the risk in some genetically susceptible children for early life problems like complex febrile seizures, myelin damage, and what has been called "mitochondrial meltdown." All three have been identified in medical journals and/or the U.S. federal Vaccine Court as plausible triggers of regressive autism. And all three can occur with, or without, vaccines.
They should be studied more, in my opinion.
The answer is not to stop vaccinating -- that would lead to widespread disease and suffering. The answer is to find out which children might be particularly susceptible to which vaccines, vaccine combinations or vaccine ingredients, and devise a schedule that is individually tuned to their specific conditions. This will build parental trust and strengthen, not weaken, the national vaccine program.
Even the CDC states:

Although some may call it a "one size fits all" approach, the recommended vaccine schedule is flexible, and it does account for instances when a child should not receive a recommended vaccine or when a recommended vaccine should be delayed. Those decisions, however, are best made in consultation with the child's doctor, and parents shouldn't be reluctant to have such discussions.

Until science can tell parents which children are most genetically vulnerable to neuroimmune injuries, more people around the country will probably "go Park Slope," if you will, and devise their own selection of vaccines at their own chosen schedule.
One hopes they proceed with great caution. For example, spreading out vaccines within the same series might confer less immunity, though we don't know because this has not been thoroughly studied.
Some parents might also skip the triple live-virus MMR vaccine altogether, because the manufacturer refuses to offer separate measels, mumps and rubella shots. Offering this simple choice alone might boost immunization rates by a couple of percentage points, so why not do it?
I have never agreed with the "anti-vaccine" movement, whose size and influence has been somewhat overblown by the media. Vaccination rates remain high. A recent wave of whooping cough in California occurred largely among vaccinated individuals. In fact, unvaccinated adults may have played a role: Only 1-in-10 adults in San Diego are believed to have received a pertussis booster shot, for example. Nobody is calling the other 90 percent dangerous "anti-vaxers," even if they may have helped create an outbreak that killed several children.

Why So Much Autism?
There is clearly no single cause of autism, and we are not going to find answers looking only at genes, or for that matter, only at thimerosal or MMR. But there remain many reasons why some parents, doctors, scientists and people with autism say a vaccine connection cannot be ruled out, at least in some cases.
My motive has never been to "blame vaccines." I have no personal reason whatsoever to oppose them, and little to gain -- believe me. What I have been trying to do is find out why so many more kids today are so sick.
I do not belive that better diagnosis and wider awareness can explain away a tidal wave of suffering. Such dinosaur mentality never helped a single child, and most credible scientists are abandoning it.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Dr. Irva Hertz-Picciotto, an epidemiology professor at the University of California, Davis MIND Institute, has said. Those culprits, she said, might lie "in the microbial world and in the chemical world."
Another good example is Francis S. Collins, M.D., Ph.D, current Director of the NIH. "Recent increases in chronic diseases (like) autism cannot be due to major shifts in the human gene pool. They must be due to changes in the environment" and other factors, he told Congress in 2006. Collins called for more research into "environmental toxins, dietary intake and physical activity," in order to "determine an individual's biological response to those influences."
Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee, concurred with his boss, Dr. Collins, when he told me, "There is no question that there has got to be an environmental component here," because "this is not something that can be explained away by methodology, by diagnosis."
In my opinion, many children with autism are toxic. Some thing or things happened to make them sick. Unfortunately, our world has become a hazardous juggernaut through which increasingly fewer infants seem to emerge unscathed. We need to identify what is blocking their way, and fix it.
I know that many people will say the vaccine issue has been thoroughly investigated and debunked. I honestly wish that were the case, but it simply is not true. All of the "vaccine-autism" studies you hear about investigated just one childhood vaccine out of 14 (MMR), or one vaccine ingredient out of dozens (thimerosal). That is like announcing that air pollution does not cause lung cancer because you looked at carbon monoxide, alone, and hydrogen sulfide, alone, and found no link.
Moreover, many of the large epidemiological studies that purport to show no association between MMR or thimerosal and autism were conducted by people with vested interests -- financial or professional -- in defending vaccines and vaccine programs. Much worse than that, the vast majority of these studies were marked by methodological flaws that limit their usefulness and legitimacy. A thorough point-by-point rebuttal of the epidemiology will soon be published by the advocacy group SafeMinds.
What we do know is that reported autism rates began to explode right around the 1987-88 birth cohorts in the United States and a few other western countries, according to an EPA study.
"The greatest increase in ASD prevalence occurred in cohorts born between 1987 and 1992 across the United States," the EPA study concluded. Rates did not begin to increase in developing countries until a number of years later.
U.S. special education data found the exact same thing: ASD among students nearly tripled between the 1988 cohort (5-per-10,000) and the 1990 cohort (14.3-per-10,000) and then tripled again by the 1992 cohort (42.1-per-10,000). After that, the rate of increase slowed down significantly. Some of this increase is clearly due to an expansion of the ASD definition, but not all of it.

That should give scientists a lot to work with. If we believe the head of the NIH, then autism might be the result of "environmental toxins" interacting with individual genes. If we believe EPA scientists and Department of Education data, ASD rates boomed between the 1988 and 1992 birth cohorts, and increased at a much slower pace after that.
It seems reasonable to suspect, then, that average U.S. exposures to the environmental toxin(s) in question increased around 1988 (though they certainly were introduced before that) and continued to rise rapidly until at least 1992, when they began to level off. These exposures would have to have increased in developing countries several years later.
That seems like it would narrow the list down considerably. Because there is no one cause of autism, we need to look at all possible exposures and other environmental factors that might have increased dramatically during those years, including plastics, flame retardants, jet fuel, pesticides, viruses and retroviruses, parental age and, yes, the vaccine program.
For example, the HiB vaccine series was introduced in 1988, a fourth vaccine was added to the DTaP series around 1990, and the HepB series was introduced in 1991, with several years of increased uptake after that before it reached its current high levels. These vaccines have not been studied in direct relation to an ASD risk, except for one HepB paper that found an association (see below).
We also know that autism rates are different in different populations. The latest CDC figures available (from the 1998 birth cohort) show an overall U.S. rate of 91-per-10,000 children (1-in-110), and nearly 2 percent of all boys. Among U.S. military families, however, the rate is reportedly 25 percent higher, at 114-per-10,000 (1-in-88) and among Somali immigrants in Minnesota, it could be as high as 357-per-10,000).
Up in Canada, things are different altogether. In Alberta, the reported rate is, at the very most, 52-per-10,000, which is on par with the rest of Canada, except for Montreal, where the reported rate is 25 percent higher, at 65-per-10,000. The only exception is among Aboriginal (Native American) children in Alberta, whose reported rate was a very low 23-per-10,000. The rate among Aboriginal children in other Canadian provinces is also reportedly low.
Inadequate access to health care and diagnosis, a rural lifestyle and/or genetic differences might explain the apparent lower risk, the authors said, noting a somewhat similar trend among Aboriginal children in Australia, "and pointing to apparent differences in risk of ASD among Aboriginal people living in industrialized countries compared to the rest of the population."
Meanwhile, children of immigrant parents in Montreal seem to have a much higher ASD rate than average.
Exposure to environmental factors most likely not only increased between 1988 and 1992, it may have been most impactful among children of Somali immigrants, followed by U.S. children of military personnel, followed by other U.S. children, followed by children of immigrants to Canada, followed by non-Indian Canadian-born children and (possibly) followed by Aboriginal children in Canada.
Of course, these exposures would have to be studied in the context of genetic make-up, which might vary significantly among some of these populations and thus affect their response to environmental triggers. There are probably differences in the way children are diagnosed and documented in different regions, as well, due to cultutral and other factors.
On the other hand, if you look at vaccination rates, you find that Canadian Aboriginal children lag behind other Canadians by about 20 percent, and "suffered from higher rates of vaccine-preventable diseases," as a result, according to Health Canada.
Meanwhile, unlike U.S. children, most Canadian kids do not receive the three-dose Hepatitis B vaccine beginning at birth, except for children of immigrants, who are concentrated in large cities like Montreal. One paper in the Journal of Toxicology and Environmental Health suggested that boys who received the HepB vaccine beginning at birth were three times more likely to develop an ASD than boys who did not.
In the second half of this two-part series, I will look at some of the exciting new autism science that has been developed lately, especially around seizure disorders, mitochondrial dysfunction and the destruction of myelin -- the fatty acid coating that insulates and protects the brain and the rest of the central nervous system.
As I mentioned above, complex seizures, demyelinating disorders and mitochondrial "meltdowns" have all been implicated in autistic regression. All three can happen in nature without vaccines being involved. In fact, all three can be triggered by childhood illnesses that are prevented by vaccines.
In that sense, it's likely that some children have avoided autistic regression precisely because of their immunizations. On the other hand, if vaccines generally prevented ASD, rates would have gone way down since 1988, and not in the opposite direction.
A good example is ADEM, or acute disseminated encephalomyelitis, in which the brain's myelin sheath is severely damaged, usually only temporarily. The U.S. Vaccine Injury Compensation Program (VICP), better known as "Vaccine Court," has ruled that HepB, MMR and other vaccines can result in ADEM and other demyelinating disorders. In one case, Bailey Banks, the VICP found that MMR-induced ADEM resulted in Pervasive Developmental Disorder-Not Otherwise Specified, which is an ASD.
In another successful VICP case, the special master found that the MMR vaccine had contributed to ADEM, as well as GI distress. It was a ruling that eloquently described the paradox of vaccines that can cause the same disorders as the viral infections they were designed to prevent.
"What is striking to the court is that the most common cause of ADEM is the measles virus, and the vaccine at issue is a live (though attenuated) measles virus vaccine," the judge wrote. "That the virus is attenuated in the vaccine does not make it less likely than the natural or wild virus to be the cause of ADEM."
ADEM cases have fallen to one-third of their prior number because of measles vaccination, the ruling noted. But even the government's expert witness defending the MMR "admitted it is biologically plausible that measles vaccine causes ADEM."
Wild measles virus can cause ADEM in 1-in-1,000 children, a very powerful argument for immunization. On the other hand, a small fraction of children might be at risk for ADEM from the MMR vaccine itself, (the special master said the fact that the vaccine measels virus was attenuated made this no less likely, though I am unaware of any MMR-ADEM studies), and that particular vaccine injury might lead to an ASD.
In other cases, such as children with mitochondrial dysfunction, we may want to give some vaccines as early as possible in order to prevent the type of fever that can send these children into autistic regression (hardly the rant of a dangerous anti-vaxer). On the other hand, in one study, 12 out of 17 children with ASD and mitochondrial disease regressed after a fever greater than 101 degrees Fahrenheit. In 4 of those 12 cases (33 percent), the fever occurred after routine vaccination.
The answer in such cases may be to vaccinate earlier, but less intensively. Douglas C. Wallace, Ph.D, head of the Center of Mitochondrial and Epigenomic Medicine at Children's Hospital of Philadelphia, told the National Vaccine Advisory Committee that, when it comes to mitochondrial disorders, "We advocate spreading vaccines out as much as possible. Each time you vaccinate, you're creating a challenge for the system, and if a child has an impaired system, that could in fact trigger further clinical problems."

Finally, we are going to be hearing a good deal more about vaccines, seizure disorders, and autism as a "residual sequela" of the injury. Maybe vaccines can't cause autism, as the government says, but they can cause complex seizures.
And complex seizures, "during early postnatal development may alter synaptic plasticity and contribute to learning and behavioral disorders" in certain types of children, said one recent study. "Early life seizures may produce a variety of cellular and molecular changes in hippocampus that may contribute to the enhanced risk of IDDs and ASDs in patients with early life seizures and epilepsy."
That study did not link vaccine-induced complex seizures to residual sequelae. But the federal Vaccine Injury Compensation Program has many cases of normally developing children who developed seizure disorders and "encephalopathy" (brain disease) following vaccination.
"This pattern is seen frequently in vaccine cases. An otherwise healthy petitioner receives a vaccination, the vaccine causes a fever, which in turn causes or triggers a complex febrile seizure," one VICP special master wrote in ruling that the DTaP vaccine "was the legal cause of (the child's) seizure disorder and developmental delay."
Some children who suffer from vaccine-induced complex seizures go on to suffer from "developmental delay," "behavioral problems," "affective disorders," "mild mental retardation" and other residual sequelae, VICP records show. Some of them also develop an ASD, and some now get government funds to pay for things such as applied behavioral analysis (ABA), a treatment used mostly for ASD.
Either way, the difference between a child with a seizure disorder, encephalopathy, developmental delay and behavioral problems, and a child with autism spectrum disorder, is hardly vast. Given that vaccines can sometimes cause injuries that lead to the former, why is it so outrageous -- why is it so "anti-vaccine" -- to ask if they can lead to the latter?
As one special master wrote: "It is exceedingly reasonable to conclude that where the vaccine is associated with fever and seizure and the seizure is of a complex nature, in the absence of proof of an alternative cause, it is the vaccine that is responsible for a subsequent epilepsy and residual sequelae" (Italics added).
Developmental delays including ASD are residual sequelae of some vaccine-induced adverse events, the VICP has determined. What proportion of ASD cases resulted from a vaccine injury? We may never know.
The CDC estimates that there are about 760,000 Americans under 21 with an ASD. Even if just 1 percent of those cases was linked to vaccines (though I believe it is higher), that would mean 7,600 young Americans with a vaccine-associated ASD.
In that case, their parents would be neither anti-vaccine nor lunatic fringe. They would be right.
This is part one of a two-part series.

Angry, and a little sad

2011-04-15T23:25:00.000-05:00

It is frusterating to have to deal with school physicals, and doctors who insist that catching KC up on his vaccines will be the right thing to do. Its what I should do...if I want to protect my son. Or so I am told.. But wait, I have let you guys help me "protect" my son before...and look where it got me! I can't take any more of that kind of help. We are full to the brim with problems as it is.

This may be right for some people, but not for me. Not for my son. I don't understand why people would want me to do something to my son if I know that something will negatively affect his development. The very development we so carefully nurture and mold each day. It seems a bit backwards to me, that someone wants to take that away. And then I am the crazy one for not wanting to do it! Sorry, we see things differently, but its my son at the end of your needle. Stay the fuck awaw.

I don't disrespect people who vaccinate. It might be the right thing for you and your child. But its not right for me and mine. And thats ok. For most of us that is. Its ok to disagree, and to think different things are right for different children. Often times they are. Just please don't think I am crazy. I am crazy only in the sense that I am crazy about KC.

The kind of crazy, in fact, that leads me to defend my position to want to keep him as safe as possible. Not too crazy though...I only love him more than any human being could love another human being. Thats it : )

How do YOU spell Autism?

2011-04-15T22:29:00.001-05:00

How to spell Autism

A

I have to say the first emotion I felt was Anger, I was angry that this
had happened to me, I had been so careful,
I made an appointment with my doctor, when I was barely a month along,
I took good care of myself, I ate well,
and didn't abuse my body with drugs or alcohol, or smoking.
I felt such rage at first, this was not fair,
some women neglected themselves, and didn't care for the child inside,
and their child was perfect. Why not mine?

U

Unbelief..... denial...........you name it, I felt it. This was not
happening to me, I would wake up in the night, and it would hit me, my
child has autism, and then I would plug my ears, trying to stop the
voices in my head, I would bury my head in the pillow, refusing to
believe this was happening to us. It took me a long time to let it sink
in, and to this day, I sometimes forget, and then the realization hits
me, and it knocks me to my knees again. It takes all my strength to get
up. But I do, because I have to, I have to be there for my child.

T

Of course the tears, tears of rage, panic, frustration. Gut wrenching
tears in the middle of the night, somehow it always seems worse in the
night. The house is quiet at last, and there is time to think, to
ponder, to pray. Tears though are such a relief, without their outlet, I
would have gone crazy. But, I have held them back so many times, in a
store when someone makes a cruel remark,
or a child who approaches mine, then backs off with that 'look' on his face.
I refuse to cry then, because I still have my pride, and it although it
is tattered, I cling to it like a security blanket.

I

Isolation, oh yes, the isolation. Friends seemed to disappear into thin
air, when they found out.
Sometimes I wanted to scream "It's not catching, " but they wouldn't hear
me, they were too busy keeping their child away from mine. The phone
stopped ringing too, and people would turn away at Church, avert their
eyes when my child had a tantrum. The isolation is the hardest
thing.......... being alone hurts. At the time in my life when I needed
friends and family the most, the pain of them looking the other way, was
indescribable. But I have found friends, people who know the path I
take, for it is their journey too. For this blessing I am so grateful.
These are the true friends, the ones who are there for me, when life is
unbearable.

S

Sadness and Solace, I have felt the sadness of knowing my child will not
be like other children, I have wept many tears for him. I have spent my
waking hours, and sleepless nights worrying about his future, who will
care for him, what kind of adult will he be? Will someone be there for
him, when I am gone? There is such pain in not knowing, there is nothing
so hard for a parent, than realizing that one day, you will not be there
to take care of your child. And knowing that this child will always need
your care. But there is Solace too, and I have felt this peace,
I have learned to accept this Autism, I cannot erase it,
nor will I embrace it. But I have come to a feeling of peace, and I go on.

M

Mercy and Magic, Have mercy on me, It's so hard to raise a child when
others look on, and instead of holding out a hand to help, they stand in
judgment. Don't judge me, when my child acts out, when he screams
because something has changed in his environment, he doesn't do it
purposefully, he is only reacting to his feelings. I am a good mother, I
love my child like you love yours, I want the best for him, yet I cannot
give in to him. He looks to me and I must teach him,
just as you teach your child. I may do it differently,
because my child is different. He learns in his own way,
and I have to teach him in a way that to others may seem odd, or unusual.

Magic? Oh yes, there is magic. I have seen my child blossom, I have
seen him learn, I have watched his wonder, and rejoiced in his small
steps. His smile is magic, and his heart is gold.
I did not choose this journey, but somehow it is mine, and I must see the
roses, as I walk upon the rocky pathway. I did not ask for this, but it
was given to me, and I must be strong enough to bear it. If I cannot,
then I am lost, if I give up, who will take my place?
There is enough joy, if I look for it....... it will find me. -Unknown

Is it too late?

2011-04-14T19:53:00.000-05:00

I have spent so much time getting on and off the proverbial blogger toilet, that I hardly know if it is worth it anymore. But so often, I look at what others post and think.."Hey. I felt that way too!" So why not. So my blog is a revolving door...one second I am here, the next I abandon ship. I am going to try not to do that again. I posted a copy of a video I recently put together. Check it out if you like. I will write something else soon.
Thanks,

Karen

A Beautiful Tragedy at OneTrueMedia.com

2011-04-14T19:50:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Vaccine Rap...

2009-12-01T21:47:00.002-06:00

Haha...this video is funny as hell!

Don't Inject Me

The only part I didn't think was funny was the part where he talks about how when you realize what you've done, it's too late. I realized that I allowed my son to be injected with something that due to my family history, he never should have had. But I realized too late and the damage was done. Seems like too many people have to learn the hard way...

The Caringbridge Update...

2009-11-08T19:24:00.000-06:00

Below is the update that my Mom wrote for KC's caringbridge page.

We are gearing up to walk through the fire yet again with Mr. KC :(
He has been having some troubles for the last month or so and they continue to get worse in spite of Mommy's best efforts to slay the dragon that keeps bothering her boy.

Among the current issues are sleeplessness, extreme mood swings, biting, hitting and scratching himself and Mommy, stuttering, talking gibberish and then getting agitated that Mommy doesn't understand, lots of ear flapping and hitting himself in the head, irrational periods lasting from 5 to 30 minutes during which he needs to be restrained to keep him from hurting himself or the closest person to him, rigidness that is getting more consistent even to include a requirement that we enter in the same door we exited. Oh, and some seizing too! The list goes on but these are currently the major issues.

Poor KC and POOR Mommy! The fear surrounding what could be wrong this time and what uncovering what the problem is will entail, is overwhelming to us all. Frustration abounds, tears are flowing, and worrying is constant.

Please pray that the wonderful doctors at the U of C will swiftly find out what the problem is and how to best solve it so our little boy can enjoy his life more consistently again.

I must have been a beautiful baby...; )

2009-11-07T18:05:00.000-06:00

Danielle's words....worth a read.

2009-09-24T18:43:00.002-05:00

Once upon a time...

In a land far away...

Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.

See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.

Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.

In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.

Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.

But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.

Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.

How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.

Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.

Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.

Which leaves me wondering why?

Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?

Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.

I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.

Which brings me to my own suggestion?

If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.

I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.

I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...

Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?

If Acthar fails - Questcor will reimburse

It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.

Call me crazy, but I do believe that would generate some awareness.

Questcor is at it again....

2009-09-23T20:39:00.002-05:00

This message below is worth a read....

From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness Week

Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.

If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.

It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.

-Mike
Marissa's Dad

Do You Know Jenny?

2009-08-22T12:29:00.002-05:00

By Kent Heckenlively, Esq.

If you had a problem with alcohol in the late 1960s or 1970s you might be quietly approached by someone who said they were "a friend of Bill W." Bill Wilson was the co-founder of Alcoholics Anonymous and those who had been through his program identified themselves as “a friend of Bill W.”

To be a friend of Bill W. meant you understood certain principles, such as asking forgiveness of the people you’d harmed, and turning your life over to a higher power. One of my good friends became a “friend of Bill W.” before I met him and remains one of the finest people I know. He sometimes talks about how much AA means to him and how he has gone onto sponsor other people to become "a friend of Bill W.” But not a lot. Being "a friend of Bill W.” also means being humble, regardless of the number of people you may have helped.

The other day I joined a gym. I haven’t belonged to a gym for years, but for me it’s the best way to exercise. I know others can be diligent and throw their jogging shoes on and run out the door, but that just isn’t me. I need a gym.

And since it had been more than a decade since I’d lifted a weight I paid for a couple sessions with a trainer. The beefy trainer in his early twenties seemed as if he lived a life light years away from my concerns. In the midst of setting up a work-out routine he asked me about my hobbies, and I mentioned that I wrote for a web-newspaper on autism because I have a daughter with the disorder.

“Do you know Jenny McCarthy?” he quickly asked.

I told him I hadn’t actually had the pleasure of meeting her, but she also occasionally wrote for Age of Autism, in addition to her books and television appearances. Then I asked how he knew about her.

He went onto explain he had several cousins with autism and their parents were avid followers of Jenny. And it struck me then that Jenny McCarthy has become our common touchstone, just as Bill W. was to a generation of people struggling with addiction problems. Like alcoholics struggling to recover in the 1960s and 1970s we're still something of an underground movement, but Jenny is our code word.

I didn’t have to explain about the role of vaccines in autism, the raging debates, the “gene” studies which reveal less the more you examine them, and how we believe medical authorities are concealing vast amounts of information like the Vaccine Safety Database. My trainer knew. He knew Jenny.

And maybe that's been Jenny’s greatest contribution. You need only become familiar with her writings and public appearances to be in on the conversation. She has done so much of the education for us. We just need to continue that conversation.

When I go back I'm sure I'll have more conversations with my trainer about his cousins with autism and ways to possibly help them. I'd been looking for something of a break in going to the gym, but it doesn't seem like that's my destiny. The demands of the epidemic intrude even as I'm struggling to fit into a pair of size 34 jeans. And in the helping tradition of Bill W. it's the only response I could give.

In the future maybe the question won’t be “Do you know Jenny McCarthy?”, but are you "a friend of Jenny?”

Is there blood on your hands?

2009-08-18T12:34:00.006-05:00

Sorry I haven't posted in a while.

I don't know why....

No energy for the fight maybe? That's a cop-out and I know it, but it is what it is. I lost it somewhere between therapy sessions, and follow up EEG's, and trips to Detroit, and meetings with specialists.

I'm struggling to get it back...because I need it.

I have six months worth of excitement, progress, fear and heartache inside, all bottled up. So I'm workin on it. I updated some things, such as my profile. It's a start anyway.

In the mean time, check out this post from a fellow blogger...

either copy and paste below OR just click on my title "Is there blood on your hands?"

http://crystaldavidsonengler.blogspot.com/2009/08/1-in-100-when-will-you-listen.html

Love the message...and the graphics!

For now...

Karen

Autism research blocked...

2009-01-27T09:02:00.001-06:00

PRESS RELEASE
January 16, 2009

Federal Members Of Advisory Committee Block Vaccine-Autism Research, Defy Wishes Of Its Own Scientists, Autism Community, and Congress
SafeMinds Withdraws Support for Autism Research Strategic Plan, Asks Daschle to Investigate.
JANUARY 16, 2009 - In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC's scientific work groups and Congress. The maneuver to re-vote on the vaccine-autism studies was initiated by the IACC's representative from the CDC and pushed through by the IACC Chair, Dr. Tom Insel, Director of the National Institute of Mental Health of NIH.

Unlike most Federal advisory committees, the IACC is dominated by government representatives occupying 12 of the 18 seats. Of the 6 public members, 5 voted to retain the vaccine research at the meeting. The lone dissenting public member resigned from her organization, Autism Speaks, the night before the meeting. Autism Speaks has issued a statement objecting to her vote.

The CDC, part of HHS along with NIH, has been criticized by parents citing failure to uphold vaccine safety. In a surprising moment of candor, Dr. Insel cited HHS conflicts of interests on vaccine-autism research due to the over 5,000 autism lawsuits pending against HHS. His comment supports the autism community's contention that those in charge of promoting vaccine use while assuring safety are fundamentally conflicted and should not investigate themselves.

IACC Member and SafeMinds Vice-President Lyn Redwood stated, "Revisiting objectives already approved did not appear on the meeting's agenda." She added, "Advocacy groups and legislators have been marginalized in this process."

Senators Enzi, Dodd, Kennedy and Santorum, as well as Representatives Barton and Smith made statements which are part of the Combating Autism Act of 2006 legislative history that research on vaccines and their components and autism should be implemented by the IACC.

Due to the IACC's actions, SafeMinds has withdrawn its support of the IACC Strategic Plan for Autism Research and requests that incoming HHS Secretary Daschle investigate the IACC's action and reconstitute the committee, including removal of NIMH as its lead agency.

SafeMinds is a private nonprofit organization that investigates and raises awareness of the risks to children of exposure to mercury from the environment and medical products, including thimerosal in vaccines.

Seizure Video

2009-01-12T14:23:00.003-06:00

KC just had a clean EEG, but this video shows obvious seizure behavior. The neuro only saw a small clip of this and he is guessing complex partial or partial, absence and myoclonic. I am worried now that KC has been seizing all along because several times I thought he was but took him in for an EEG and after it was clean I wrote it off as sensory or something else. This time it is undeniable. Not sure if we will need another med now with the Zonegran. Friday we see the neuro and he will see this entire video.

Awesome Video...thanks Danielle!

2008-12-02T21:07:00.001-06:00

Article on Senator Daschle and Vaccines

2008-11-21T16:43:00.000-06:00

Nearly 60 percent of all autism parents believe that vaccines played a role in their child's illness, according to a recent survey. Still, their views have been met with scorn and ridicule from most of the scientific community, which insists that the vaccine-autism debate is not only a sham, but over.

These critics, of course, ignore the fact that ongoing investigations into mercury, vaccines and autism continue, and will continue, in the vast medical research apparatus contained within the mammoth US Department of Health and Human Services.

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

Senator Daschle is not anti-vaccine, but his record shows his determination to question - and even oppose - vaccine makers and big pharmaceutical interests when it comes to protecting the rights of American medical consumers.

It was in November of 2002 (exactly six years ago) when I got my inspiration to write "Evidence of Harm." The House had just passed the Homeland Security Bill, onto which some unidentified Member (it turned out to be Dick Armey) had attached a last-minute rider granting autism liability protection to all drug companies using the mercury-based preservative thimerosal in US childhood vaccines.

As I wrote in my book, many autism parents mobilized to try to stop the undemocratically amended Bill in the Senate. Their chief allies were Joe Lieberman and Tom Daschle, who authored an amendment to the Homeland Security Bill that included this provision:

Childhood Vaccines

The Republican substitute would take complaints (against drug companies) about vaccine additives out of the courts and require them to be made through what's called the Federal Vaccine Injury Compensation Program, which handles other vaccine-related claims. This would mean a host of lawsuits could be dismissed, including claims involving the mercury-based preservative, thimerosal, which defendants claim causes autism in children.

The Democratic amendment would strike this provision.

For the parents in my book, there was only a few days before the Senate voted on the homeland bill. As I wrote:

Senate Democrats Tom Daschle and Joe Lieberman were offering an amendment to remove the riders, but no one thought it would be easy. For one thing, the House had already adjourned. If the Senate were to tinker with the legislation, House members would have to be recalled en masse to special session to vote on the revamped bill. In the age of Al Qaeda, and with the winds of war rising in Iraq, such a delay for many lawmakers would be untenable
.
But the Democrats were backing the so-called "Mercury Moms" on this one:

"We are heartened that Senators Lieberman and Daschle are offering an amendment to remove extraneous additions like the thimerosal liability shield from the Homeland Security Act," said Sallie (Bernard, of SAFE MINDS) in the statement. "This addition is an example of all that is wrong with a system of using last minute riders to subvert the legislative process."
On November 15, 2002, Daschle spoke on the Senate floor:

Senator Lieberman and I filed an amendment yesterday that deals with all of the egregious special interest provisions. There is a provision, as you may know, that provides liability protection for pharmaceutical companies that actually make mercury-based vaccine preservatives that actually have caused autism in children. It wipes out all of the litigation.
Still, Republicans were narrowly able to defeat the amendment later that afternoon.

But the next day, Daschle returned to the floor, vowing to fight on. "This isn't over," he said. "But even if we are successful, I don't know if you can put the pieces back together for these families." (The thimerosal provision was removed from the Homeland Bill by an act of Congress in January of 2003).

It wasn't the only time that Senator Daschle would stand up publicly to vaccine makers in favor of prudent public safety.

A less publicized provision of the Lieberman-Daschle Homeland Security amendment read as follows:

SAFETY Act

The Republican substitute would give the Secretary of the new Department broad authority to designate certain technologies as so-called "qualified anti-terrorism technologies." This designation would entitle the seller of that technology to broad liability protection from any claim arising out of, relating to, or resulting from an act of terrorism, including complete immunity in many cases, no matter how negligent the seller. It would cap the seller's liability at the limits of its insurance policy.

The Democratic amendment would strike this provision.

Daschle was a vocal skeptic of the safety of the anthrax vaccine. The US was buying millions of doses at the time, especially after spores were sent to the offices of certain U.S. Officials, including Tom Daschle.

According to the website fiercevaccines.com:

Federal officials believe that Senator Tom Daschle's objections to the anthrax vaccine being given to soldiers may have been a prime reason why he was targeted in the 2001 anthrax attacks. Daschle raised concerns that the vaccine would make members of the National Guard ill--a suggestion that anthrax vaccine researcher Bruce Ivins evidently was angry about.

Speculation has been rampant that Ivins, a federal scientist directly engaged in vaccine research, initiated a series of deadly attacks using anthrax in order to boost interest and funding for his work and perhaps profit from a scramble for a new and better vaccine. Ivins committed suicide on August 1 as the FBI was preparing a case against him.

Other reports claim that government documents show that Daschle staff members were pressuring the Department of Defense to abandon Ivins' vaccine, due to safety concerns.

The military has reported that up to 2% of all military service members may have received debilitating injuries from vaccines they were given. That could mean upwards of 48,000 men and women, some of them likely wounded by the same anthrax vaccine that Senator Daschle was trying to kill.

Again, I am sure that Senator Daschle is not anti-vaccine, and I have no idea what his views are on the vaccine-autism debate today.

But I do know that, six years ago, he said that "mercury-based vaccine preservatives actually have caused autism in children." And I know that he tried to stop production of a vaccine that he felt was hurting far too many people.

I can already anticipate the howls of protest from certain sectors of the scientific community. But I hope they will give the next HHS Secretary the respect and support he will need to tackle autism and all the other health problems we face.

For his open mind and willingness to stand up for consumers - civilian and military - alone, I think that Daschle is a choice that many autism families will support.

If nothing else, his views on vaccine safety issues, including autism, are sure to get a fair and ample hearing at the Senate confirmation hearings.

Finally, speaking of the Homeland Security Bill and the thimerosal rider, this is how I opened the first page of the Prologue of "Evidence of Harm":

Lyn Redwood got the call from a lawyer friend only an hour before the (Homeland Security) vote. The prospects were bad, he told her. It was too late to do much about it now.
It turns out that the "lawyer friend" will probably be working as a senior member of the Obama Administration, right alongside Secretary Daschle.

(Many thanks to www.vaccinationnews.com for help with archived articles)

Related:

Daschle Pick Hailed By Health Care Advocates

Barack Obama
Autism

Trick or Treating Fun

2008-11-01T08:25:00.007-05:00

Enough pictures, can we go yet??

Awe...he's doing it himself!

And to think last year we had to carry them to the door!

We are tired now!

Now let me at the candy!

A Very Happy Halloween

2008-10-31T21:27:00.007-05:00

My little puppy is such a ham...

And Gran sure is happy....

And Mommy has a lot to smile about...

Because.....

KC's EEG was NORMAL!!!

Happy halloween everyone!

I will dream new dreams...

2008-10-23T17:00:00.006-05:00

My brother once told me that it's never as bad as it seems and it's never as good as it seems. Tonight that is ringing true for me.

It's funny how I had it in my mind how the EI evaluation was going to go. I pictured one of two scenarios. Either they would tell me I was crazy, and he was fine, or they would recommend speech therapy and tell us to watch some of his behaviors closly.

Not quite. My Mom and I came out of the meeting with five new specialists to see, new equipment, tests, and and heavy hearts.

They asked all of the autism questions. They could see the obvious, which is that he is social and makes eye contact, etc. But.. Does he love to stack blocks and line up his toys? Yes. Does he understand dangerous situations such as a hot stove? No. Does he interact with other children? Well, he parallel plays and imitates. So not exactly. Does he initiate and maintain conversation? Um, well, nope.

Occupational Therapy 1xper week. Need to start using social stories. See a developmental pediatrician and a behavior specialist. Sensory issues for sure. Seeks stimulation, lack of body awareness. Lack of sensation. Recommended weighted compression vest. Can't control his meltdowns appropriately.

Speech he was within the normal limits in terms of how many words, but his pronunciation is off so we will get speech therapy 1x per month and need to get a hearing test asap. Not developmentally ready to begin working on the pronunciation problems.

Physical therapy 1xper month. Low muscle tone, weakness and instability in trunk. Immature sitting positions. Ankles turning inward, instable gait. Need to get fitted for DAFOs.

So, we have our orders. All of the above, along with referrals to see the developmental pediatrician, behavior specialist, ENT specialist, allergist, and pediatric dietitian. Let the fun begin.

I sound bitter...I know I do. I want so badly to be brave and strong. Yesterday I was sharing the good news...no autism diagnosis yet...additional therapy that I didn't expect...lots of avenues to try...Yesterday I was brave, but today my heart hurts. Today it's had time to sink in. I was researching proprioceptive dysfunction, which I found out KC has, and one paragraph said "So your kid will probably never be an athlete but he can learn to function." It seems so trivial, but I almost thought he'd get off scott free without having any doors shut to him before he got to decide for himself. I know it could be so much worse. I feel so conflicted, and guilty for mourning these losses when others who I know and admire are bravely weathering larger losses every day with their children. I suppose thinking about how much worse it could be is a bit like playing the "what if" game. I can't live in terms of "what ifs". "What is" is that every Mom dreams of having a healthy baby who doesn't have to struggle each step of the way. That dream was my reality when KC was born, then he got sick and it was gone, then he got better and the dream was reality again, and ever since it's been slowly, piece by piece, being taken away from me. I don't know how to come to terms with it because I don't know what the future will hold for him. "What is" is that yesterday KC's service coordinator asked me to sign a form releasing KC's records to the school district so that in a year when KC turns three he can be placed in a special ed program in preschool. "What is" is that I thought I knew pain and joy before I had KC, and it didn't even scratch the surface.

Mothers live wrapped up in the illusion that we can protect our children. I can no sooner protect my son from this then I could move the sun and the stars, but I can love him. I will remember that having courage often means letting go. I will be brave. I will let go of my illusions and I will dream new dreams. I will love my son to the ends of the earth and back and he will be always be perfect in my eyes. Always.

It only takes two words...

2008-10-06T22:22:00.004-05:00

to melt my already soft heart. After another gut wrenching evening of KC crying, I opened the yogurt he requested. I stuck the spoon in and he freaked. I realized he wanted to feed himself. I handed him the spoon, and he started shoveling it in. The sobs subsided. I looked at him and smiled. I didn't expect him to respond at all, but his eyes met mine and he smiled back. With barely more than a whisper I heard him say, Hi Mama. Tears filled my eyes. I got a glimpse of my son at that moment. He's in there, he just needs me to find him.
KC, keep smiling baby. I know it's hard, but when you can smile, I'll be here to smile back. I love every second of it. You are beautiful inside and out.

I lost the key...

2008-10-05T20:37:00.002-05:00

This weekend, that sweet smile was noticeably absent from my son's face. The sound of laughter from a happy two year old was non existent. After several weeks of improvement on the GFCF diet, KC is worse than ever. My heart hurts for him. I don't even know what to do. When he flips his lid and throws food all over, the Mommy in me knows I have to teach him not to. I use time out usually, but at times like this it seems that he can't even control himself, so I feel horrible punishing him. I just can't let him think it's ok to do that. Chocolate pudding all over me, Gran, KC and the carpet is not ok. He asked for the pudding, then freaked when we opened the lid and put the spoon in. He ran off crying and my Mom and I were trying to figure out what the problem was and he ran back and before we knew it he had his hand in the pudding, grabbing out fistfuls and throwing it! A few times after, he asked for pudding and freaked out again when I offered it to him. I realized hours later that last time KC had pudding it was runny so I put it in a cup for him to drink. My only though is that it wasn't the same as last time. We also had throwing incidents with soy mac and cheese, and spaghetti squash also. With equally baffling reasons (to me). At one point he picked up a book and bashed the dog over the head, completely unprovoked. He's never done that. He cried so much this weekend, that my Mom and I were reduced to walking the floors with him, as he sobbed, many times. Some other odd things that happened before have started again also, such as picking at his eyes. He grabs the eyelash and pulls. He takes a pancake (or other food item), eats half of it, and then hides the rest and asks for more. He eats way more than usual. This stuff doesn't seem remarkable for a two year old, but these things all happen at the same time, and not independently. We took him to an open house at the fire station today. He wasn't afraid of the smoke simulator. He wasn't afraid of the fire trucks. But the plastic ducks in the pool freaked him out. KC LOVES DUCKS!!! I just don't get it. He just isn't the same kid. I'm going to call early intervention tomorrow and see what the heck is taking so long for the eval. I'm going to schedule the EEG that I've been putting off. He did have a few seizures today, although I only think that is part of the problem. I'm so scared. Something is wrong with him. He seems to be loosing his mind and I don't know how to help him. I'm his Mom. I'm supposed to know what to do. I'm not supposed to loose the key...

Reflecting....

2008-09-29T21:53:00.003-05:00

I have been reflecting a lot lately. I was reading through some of my old myspace blogs today and decided to post a few. In some ways KC and I have come so far, and in some ways, my fears are coming true, but it could be so much worse...it could always be worse.

This is not the life I ordered.....
Ok, so I should be happy with what I have. I am lucky. My son is beatuiful, my mom is awesome, I have a good job and good friends. I am greatful...yet I am sad. My heart hurts for the struggles my baby has been through. I fear the future...the uncertainty of it all. But this I can deal with. "I wanted a perfect ending. Now I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and a making the best of it without knowing what's going to happen next. (Quote by-Gilda Radner)
I understand this. I embrace it in fact. I am facing a fate I cannot change, I am called upon to make the best of it by rising above myself and growing beyond my myself. I am learning to be stong in the face of horror, I remember to smile in between those bad moments. What I can't get over is the guilt. My mind knows that what happened to KC is not my fault. My mind knows that I an informed decision. However, my heart cannot accept the fact that I held my screaming baby down so the doctor could give him a vaccine shot that caused him to have a severe neurological disorder, consequently changing the course of his entire life. He cried the whole way home, woulden't even look at me. I consoled myself with the knowledge that what I did might save him from some horrible disease, instead it gave him one. How am I supposed to live with that? I watch him struggle with the medicine, constant tests, and yet he endures like a soldier My eight month is a soldier : (
Getting back to the fact that I am lucky....so far KC is developing normally. Most kids with IS don't.
I find myself asking why did this happen to my kid? Why me? When in fact I should be asking myself, how did I get so blessed, that my son is still "normal"? (I hate that word, but for lack of a better one...)
Yet a part of me still wants to focus on the "what if's". What if he developes Autism? (This is common in kids with IS)(Update-it is likely that KC is on the spectrum) What if the seizures don't ever go away? There is still so much damage to be done....What if just one of the many possible future problems occurs, what will his life be like then? Then I find myself back to the one, ever present question. What if I would have known not to get that vaccine?
As I sit here and write, tears spring to my eyes, and I know I need to move on and accept it, and forgive myself. I need to be brave. I need to realize that having courage often means letting go....
I love my son. I would cut my own heart out if it would save him one ounce of pain. I cannot do that. So I will make a promise to myself. I will process this pain, and I will release it. I will accept that fact that I made a decision I regret, and I will make the next best choice. I will endure. I will move on. I will forgive myself, and let this pain go, for myself as much as for him. I will.

My controversial thoughts on mass immunization...

I'm sure you all have heard in the news, the speculation regarding the MMR shot causing Autism. The media has opened a big can of worms regarding all vaccines. Some of you may wonder if you should vaccinate your kids, others know that they will vaccinate either way. If you research this, you will find very strong opinions on both sides of the fence. I stand somewhere in the middle. Here are my thoughts:

The fact that the CDC states that there is no proof that MMR causes autism is directly related to the fact that they won't spend any money researching it!

I believe that vaccinations are a vital part of a healthy society, but the CDC's "one size fits all" methods are in serious need of work.

The CDC states that the thermosal has been removed from all vaccines (not true, some do still contain mercury) therefore this proves that they are safe. All this proves to me is that the thermosal is not the only toxin causing the problem in question!

The CDC does acknowledge that the pertussis vaccine used to cause infantile spasms, but claims that when they changed to the A Cellular, the problem was solved. My response to this is LOOK AT MY BABY. Look at HIM. Within 9 days of having this shot he was having hundreds of seizures a day. He hasn't been right since. Too many other parents tell this same story, but since no one will do the research, it can't be "proven"

The CDC claims that it is best for all children to have the same immunization schedule regardless of medical history, or specific circumstances, yet if there was ever a "one size does NOT fit all" situation, I think this is it. There is a lot of grey area when it comes to vaccinations and it is currently being brushed under the rug.

I will continue to vaccinate KC, but on a schedule that is best for KC. He will only receive certain ones,and they will be all seperated out (never 2 vaccines in one shot)
He will never receive another pertussis shot. (NOTE-I have decided not to vaccinate KC after lots of research and many hours of soul searching)

I can honeslty say that if I knew the risks of getting the pertussis shot, I still might have elected to get the shot for KC. But I didn't know. I made what I thought was an informed choice, but the truth is that I was missing vital information when I made that choice. I had a right to know that the pertussis shot has been known to cause infantile spasms, and the parents who's kids developed Autism from the MMR had a right to know that too. We need to be able to make a choice we can live with! If your perfectly healthy child, changed drasticaly after a vaccination shot, weather it be by siezing like KC, or verbally and socially regressing like the autistic kids after the MMR, you would not give a shit either about the CDC's protocal of mass immunization, or defense that it can't be proven (won't be proven). How am I supposed to accept that answer and care about the masses when I am too busy caring for my sick baby. He was once a happy, healthy little boy. Since his pertussis shot (3 months ago) he has had countless seizures, 5 hospitalizations(***Update-9 hospitalizations to date), been poked somewhere around 25 times attempting to start iv's, had somewhere in the ball park of 20 bloodtests, 9 weeks of daily steriod shots in his leg, been put under 3 times for testing, has 8 specialists, is on 3 different medications currently, along with a special amino acid based formula, and is going to be starting with the NG (feeding tube) as soon as the insurance crap gets worked out and we get the supplies for home. And he's still seizing. It's no wonder that he's fussy all of the time. He used to smile and laugh so much. Now I'm lucky if I hear him laugh once in a day.
There is a book, if you are interested that I think is great. It's listed below. It is not anti vaccine, rather a smart approach to vaccines.
I had a right to know. And more importantly, now I have a right to be acknowledged. My son was damaged by a vaccine, and his life will never be the same. Take some time and do some research. Trust me, you will wish you had.

Hello, my name is Autism.

2008-09-28T20:39:00.000-05:00

"My Name is Autism"

By Omri Fiman/Marty Murphy

Hello. Allow me to introduce myself to you. My name is autism.

Perhaps you know me or know of me. I am a condition, a "disorder" that
affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth "defects", I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.

I am autism. I strike boys and girls. infants and toddlers. I find my
best victims to be boys around the age of 2, but any child will do. I like
children and they are always the true victims, though I take hostage the
others in the child's family as well. It is a bit like getting 2 for the
price of one. I affect one child and "infect" the entire family.

I am autism. I strike rich and poor alike. The rich combat me with
education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.

I am autism. I am an equal opportunity disorder. I strike whites,
blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on Earth. I know no geographical bounds. I am autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics.

I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find
me, they will question everything they believe in, so why would I strike
only one group? I have affected followers of every religion on the planet.
I am autism and I am strong and getting stronger every year, every
month, every day, every minute and every second. I am concerned that money might be allotted to combat me and my takeover of children, but so far, I have little to fear. Some countries like Kuwait, are spending quite a bit of money to assist those who I have targeted and some, like the United States, would rather spend money on such ludicrous things as discovering the number of American Indians who practice Voodoo, as opposed to combating me. In an atmosphere such as that, I can flourish and wreck havoc at will.

In places such as that, I rub my hands with glee at the problems I can
cause to children, their families and to the society at large.

I am autism. When I come, I come to stay. I take the dreams and hopes
of families and trample them with delight. I see the fear and confusion in
the eyes of my victims and the see the formation of wrinkles, the worries
and pain on the face of their parents. I see the embarrassment their child
causes because of me and the parents unsuccessful attempt to hide their
child, and me. I see tears the parents cry and feel the tears of their
child. I am autism. I leave sorrow in my wake.

I am autism. I taketh away and give nothing but bewilderment and
loathing in return. I take speech and learning. I take socialization and
understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life.

What I leave behind, is almost worse than death. I am autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need. I am autism and I bet you know me or know of me. If you don't, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I am looking for new children to consume and new lives to destroy. I dread the day I will be looked upon
with pity or worse yet, understanding, for that day, is the day I will
begin to die.

But in the mean time I am safe, free to prowl onward. Free to cause the pain and suffering that I do so well. I am on a mission and have much work to do and thankfully no one is stopping me yet.

Hello. Allow me to introduce myself. My name is autism. Perhaps you know of me, if not don't worry, you will meet me soon....

Letter to Questcor

2008-09-10T11:23:00.003-05:00

Please read the letter below. My friend and fellow IS Mommy has written this to the (CEO?) of Questcor. Recall that KC was saved from IS by ACTH, which now goes for $25,000 per vial. KC used at least four vials. Whe he was on it, the price was $2000 per vial. It is with a heavy heart that I say that after 9 months spasm free, Danielle's son Trevor is once again in the grips of IS, having hundreds of seizures per day. They are still waiting for the ACTH to come....

Mr. Bailey,

I did receive your recent email with the offer to speak about our journey since Trevor's diagnosis. I chose to take some time to think it over & to seek counsel from trusted friends. The feedback was mixed...as were my emotions. And in the end I never arrived at a peace point in my core. I did not mean to leave my answer hanging. I just wasn't ready to move forward one way or the other.

But during these ensuing weeks a conclusion has been drawn for me.

We had been seeing some questionable movements from Trevor. So mild even the doctors were not convinced. But I have learned to trust my instinct...and pushed for testing.

I spent every moment of this past week hoping with each beat of my heart that this time my instinct was wrong. That Trevor's Spasms had not returned. But...as I know you are already aware...a VEEG confirmed our worst nightmare. For the second time in his 17 months of life we are holding our broken baby boy. With shattered hearts. And unrestrained tears.

During the conference call with investors the evening of the JEC hearing you publicly shared that my testimony profoundly moved you. I have heard that you even played-back my testimony for your employees. Changes were promised. Changes that would help parents navigate through the pain of IS & gain access to your medication quickly. You celebrated Trevor's quick response as a success for your company.

But while you were busy proclaiming success we could not assume the same care-free feeling. We have lived each day since Trevor's diagnosis with the breath of the IS beast on our backs...just like every other family affected by this disease. Knowing that at any moment our son could fall prey to this devastating disorder again. The odds of 20-25% relapse mean very little to a parent whose child has already suffered a rare disease. And this week proved exactly why.

Allow me to share my second experience with your company...

September 8, 2008 - I received a phone call from a young man representing Questcor's Acthar Support & Assistance Program. The very first question (and frankly...only) was regarding gathering insurance information. There was no empathy. Not even a scripted "I'm sorry your family is going through this". It was all business. And that business was making sure our insurance (which is State Medicaid btw) would be footing the bill for Trevor's treatment. In fact, I received multiple phone calls making sure the correct ID numbers were given.

Late that afternoon he called to inform me that the case was still in the works.

And as of 3pm today September 9, 2008...we are yet in a holding pattern. I have not received any phone calls from Acthar yet today. Although our nurse called afraid that perhaps she had done something wrong to delay the process. I assured her that the process should not be so complicated that she would even have to entertain that thought! At this point I doubt we will receive Trevor's treatment by tomorrow? And even should it arrive tomorrow everything will still be delayed until Thursday because we need to make arraignments for a home nurse to be present. That will make it at least four days & 160 seizures from submission to injection.

Which leaves me with a very sour taste in my mouth. Similar to the taste I experienced about 8 months ago.

I am convinced we will never agree on the price point of ACTH. I readily admit my bias on the matter. And acknowledge that your experience on this issue undoubtedly exceeds mine. In fact, I can sooner converse in Swahili than understand the many complicated layers of this issue. And yet Providence has directed that we each have our horses in this race. Mine just happens to be a beautiful baby boy.

But there are certainly some areas outside of pricing with which I take issue...

I recently read a statement made by you stating that insurance denial is rare & that NORD is picking up the tab for the families who either do not have insurance or are denied coverage. Of course, again my objectivity is skewed by our personal battle with our insurance company during Trevor's initial diagnosis.

But if it is true...and if you are indeed committed to making sure that every child in need of ACTH will get it...than I am having trouble understanding why the first priority is ensuring that insurance will be covering the bill? I cannot wrap my mind around why...in a situation as dramatically tragic as IS...your company cannot find a way to ship the drug & work out the payment arrangements later? I have been told that other drug companies have done this. With drugs less vital than ACTH. And you have emphatically stated that insurance denial is rare & that no child will go without this drug due to Questcor's "generosity".

And so it seems to me the attitude at Questcor is: Payment arrangements first - vital drug to desperate child after.

Again...I'm feeling the need to wash the sour from my mouth.

You argue that if the drug were not priced where it is today the company would go under...and ACTH would no longer be an option. This of course is not my intent. My issue has never been with the drug...but rather with the pricing & accessibility. I know first-hand that ACTH can provide a miracle.

And Questcor investors were quick to point out - $25,000 to cure her kid & she's complaining!

Correction...that would be $25,000 PER vial & as I testified Trevor's course required 5. So in actuality the bill tallied to over $125,000 for the 8 months of seizure freedom Trevor was given. But he was not cured. And yes I am complaining. Or rather...advocating.

I am advocating on behalf of the IS community as a whole. I am advocating for all the beautiful baby boys & girls afflicted with this disease. And those yet to be diagnosed.

They deserve access to this medication. Immediate...affordable... access. A little over "two day" turn around for your company is too long for a family holding a seizure ridden baby.

I am imploring you...look into the eyes of my son.

His beautiful eyes. Eyes that represent every baby living with Infantile Spasms.

Look into Trevor's eyes & prove that you care. About him...more than the bottom line. (you can do this by going to www.trevorshope.blogspot.com)

Prove it by making the turn-around time less than 24 hours from submission of paperwork to receipt of the medication. Every time. Prove it by spending more than 13% of your company's profits to fund Research & Development. Invest more on finding a cure for Infantile Spasms than you do on employee wages. Prove it by under-writing projects like the Epilepsy Phenome-Genome Project which is in progress right now.

I have been told that you are a generous...kind-hearted...caring man.

Now I'm asking you to prove it.

From the heart of a mother...

danielle foltz

Believe in him with me....

2008-08-29T22:22:00.001-05:00

It's Friday night and my son has just finished crying himself to sleep. I am still trying not to cry. Those of you who know KC's sleep habits know that he rarely cries himself to sleep, but things are different now. KC cries a lot. He screams when I drop him off at daycare. He cries when he wakes up in the morning. He cries himself to sleep, and he cries if I insist that he eat his yogurt somewhere other than the couch. He cries if I won't let him have more than three macaroni and cheese microwave dinners, because I am truly afraid that he is going to make himself sick by eating so much. And I cry because over the past month or so KC has changed in some significant ways that have led me (and others) to believe that KC is regressing into autism. Asberger's Syndrome, to be exact. I have always known that this was possible, even likely. Kids with seizures, especially IS have a much higher instance of autism than others. KC has been seizing almost daily lately. Kids with autism tend to have seizures more often so it kinda works both ways. KC has always had a few autistic tendencies, but in and of themselves they were not enough for a diagnosis, or even more than taking note. I always knew that there was something slightly different about him, but that could be said about many people. I also knew that if this was going to happen, it would likely happen near his 2nd birthday, if it hadn't already. I was just so hopeful that with all of KC's good luck that he would be ok. I wanted so badly for him to just be ok. And he will be ok, just not the way I had hoped. He has a lot going for him. He is verbal, social, and can make emotional connections. He will never be severely autistic, but to say that it will be mild might be over simplifying things. Many argue that there is no such thing as mild autism. But there is high functioning autism, specifically asberger's which is what I believe KC has. KC is extremely intelligent. He can count to 5, he knows the letter E, he knows a circle when he sees one, he can recite a few of his favorite books my memory, he remembers the tune to songs and can sing the tune. But he can't eat with a fork. He has days that he can barely walk with out falling. Lately he can't seem to stop tilting his head, and walking on his tippy toes. He is terrified of crib toys that move. He is my sweet, perfect, beautiful angle baby and right now I have that terrified feeling of wanting to scoop him into my arms and run far away from this. Of course I cannot do that, so I will once again gather the pieces of myself and do what I have to do to save my baby. I have begun researching the cassien free gluten free diet that seems to work wonders on some autistic kids. If all goes as planned, I'll start transitioning him right away. I'm going to research some things I can do at home regarding his behavior, and if need be I'll get early intervention in again. I don't even have to have him go through the official diagnosis process since he qualifies for services based on the IS. Of course he will have to eventually go through the official process, but it doesn't have to happen this second. I may take him in for an EEG, just because he seems to be seizing more and more. I'm going to research DAN doctors (defeat autism now) and see what I need to do to learn about chelation therapy and ABA therapy. And I'm going to try to keep myself together even though I feel like my world is falling apart again. Please pray for my baby. He's such a good boy, so sweet and so loving. I believe in my heart that his spirit will break through anything that he comes up against...I really do believe that. Believe in him with me, and believe that once again KC will defy the odds and will rise above whatever comes his way.

Just thought you might like to know...

2008-08-26T19:58:00.003-05:00

After a few emails back and forth, this is part of my response to someone whom I love dearly who likes to play "devil's advocate" with me on the vaccine issue. Some of you might be suprised at my feelings on this subject, but this is truly how I feel.

... Not for the point of arguing, but so you can understand why I cannot stop defending my position on this. This is not just "some cause" for me. This is about my child. IF KC never had IS, I can guarantee you that I would not have the views or knowledge that I do about vaccines. I wish I didn't have to argue this. I wish I was blissfully ignorant like most parents, but I don't have that option. I watched my son go through hell, and then learned that way to many other families have had the same experience, and I just cannot go backwards now. Unfortunately, most people who fight for this particular cause have experienced the horror of vaccinating their child, and watching them change. Weather it be seizing like KC, regressing into autism, or becoming permanently disabled, It's not like we pick and choose a cause or two out of a hat and say, well I think I'll fight for this. It's not like that. At least not with this. If that was the case I would take my choice and put it back in the hat and forget I ever heard the words "vaccine safety." But I can't do that, so I do what I can to share what I know with the people who want to hear it. But please don't ever think I chose this over what some might view as a more important cause. I'm just a mom who held down her screaming six month old baby so he could be given routine vaccines, and ended up with a living, breathing, nightmare. This is the only way I can find it in myself to live with what happened. I mean it when I say this...please forgive me for being less than kind in my response to you. My intention is never to offend, irritate, or hurt you. I am simply trying to deal with my own pain and move on in the only way I know how.

Karen

Heartbreak and Hope

2008-08-20T09:46:00.004-05:00

Please take a few moments out of your day and watch this video. It was made by Angela Utely. For those of you who are already educating before you vaccinate, this will just reaffirm all of your dedication and hard work. For those of you who are scared...be scared not to look. I'm not saying don't vaccinate. Vaccinate, but EDUCATE before you do! The faces of children on this video are just a handful of the thousands who were at the green our vaccines rally. The second song in this video is the song that was playing as we all held up pictures of our vaccine injured children in Washington. I sobbed my heart out, and every seizure, every hospital visit, every time I had to hold KC down for tests as he screamed, every second of the months and months that I had to wonder if he would make it, and what his quality of life would be, flashed before my eyes in those few moments. This didn't have to happen to KC. If you think that what I went through was frightening, and don't want to see anyone else go through it, then watch.
And check out Angela's site which is listed below(www. myspace. com/preventvaccineinjury) It is nothing short of amazing. Educate yourself. Listen to your heart, always.

Love Karen

A story that is close to my heart

2008-08-10T20:12:00.003-05:00

I got this off of my friend, and fellow IS Mama's website, (thanks Danielle: ) and I hope everyone I know reads it. It is an amazing account of what it's like to have a child with IS. I remember all too well experiencing some of the same heartache and pain that this mother did.

Love and Instinct

By Paula Michaels, Parenting.com

This is a scary story, a cautionary tale.

It’s the kind of story that, a year ago, I would have turned away from because, after all, what did a story about a sick baby have to do with me?

When Zach was born, he was perfect. His Apgars were 9.9. He was 7 pounds, 4 ounces and 21 inches long. He had fine blond hair and those murky blue infant eyes that look like the bottom of the ocean. He breastfed easily, and he grew. He did all the things he was supposed to do, at all the right times. He smiled at 7 weeks. Rolled over at 12.

When we visited Zach’s pediatrician for his once-a-month well-baby visit, her favorite word, when asked any question, was normal. She’d say it in a singsong voice. It became a joke between my husband and me. Normal, normal, normal, David and I would sing as we left her office.

I can pinpoint the day we stopped singing normal so happily: It was a weekend afternoon in early fall. We were sitting at the kitchen table, interviewing a babysitter, and I had Zach, then 6 months old, in my arms. Suddenly he flung his arms up, and his eyes rolled back slightly. It looked like something I had read about in the baby books, the “Moro reflex” common in many infants, except that he repeated the gesture a half-dozen times. Something rumbled in my gut. I called the pediatrician the next day.

“He did something strange,” I said, describing the incident.

Normal, she said. Absolutely normal. She sounded rushed. But when I got off the phone, I felt relieved. That was exactly what I’d wanted to hear. She was a top-notch pediatrician, a graduate of one of the best medical schools in the country. She was affiliated with one of the top hospitals in our city and had a burgeoning practice. If she wasn’t worried about what I had described to her, why should I be?

But the little gestures continued. Not every few hours, not even every day, but once in a while. The jerk of the arms upward. The slight roll of the eyes. And although I didn’t notice it at the time, Zach was slowing down a bit. He had stopped rolling over as much, and he seemed nowhere near ready to sit up by himself. But these are not the kinds of things that necessarily worry you as a parent. They happen slowly, incrementally. You think, My baby is tired. He’s mastered that skill, so he’s not doing it anymore. He’s a chubby baby – maybe that’s why he isn’t sitting up.

A week went by. I had a sick feeling whenever I thought about the expression on Zach’s face when these incidents would happen. I called the doctor again. This time, when she called me back and heard that I was again reporting the same thing, her voice developed an edge, so slight that I thought I might be imagining it.

“I’m really not worried about this,” she said. “Look. If he’s still doing it when he’s eight months, we’ll check into it.”

The incidents became more frequent. Every day now. In the morning, on the changing table, he would fling his arms up 10, 20 times. David and I talked about it often. We tried to figure it out. Maybe it was a delayed Moro reflex. It seemed to happen when he was tired. Babies have immature nervous systems, we’d say. We comforted ourselves and attempted to think of answers.

And then one morning, on the changing table, it happened more intensely than ever before, and I shouted to David to grab the video camera. He ran and got it and began to film Zach as his arms raised themselves in a jerky motion and his eyes fluttered backward. I called the doctor, my heart pounding. I made up an excuse because I believed she wouldn’t make time to see us for this thing I had already called her about twice in the past two weeks, something that she – without examining our baby or asking a single question – had already dismissed. I said that I wanted to bring Zach in because he was running a fever and had a cough. She couldn’t very well say no to that.

We walked into the doctor’s office armed with our camcorder. She was young, with a frenzied manner; each time we had seen her since Zach’s birth, she had walked into the office and quickly glanced down at the open chart to see who we were and what our baby’s name was. There was no sense of memory or connection. I had noticed this but had attributed it to managed care and a busy practice.

“What’s this?” she asked, eyeing the camcorder and our baby.

“We’ve videotaped those gestures,” I said, my voice shaking. I wasn’t even sure whether she remembered what I was talking about. “I want you to see it for yourself.”

David turned on the camera, and he and the doctor squinted at the digital film of our baby on the small screen attached.

“That’s what you mean?” she asked, pointing. “I really think that’s nothing.”

Something in me snapped. Now I should say here that I am not a particularly forceful person. I tend to apologize for being in the way if someone pushes past me on the street. I am shy and soft-spoken. I blush easily and have been known to stammer. But at that moment, I stood up in the doctor’s office and said, “I’m not leaving here until you call a neurologist. I want Zach to be seen by a neurologist. Today.”

To this day I don’t know what possessed me. I suppose it was a kind of mother’s instinct. I’m not sure I had ever believed in it before, that old adage that mothers simply know.

“I’ll see what I can do,” she said with a sigh. I suppose it was the videotape that did it. In this age of malpractice paranoia, she couldn’t afford to take the chance that something was in fact wrong, because now we were armed with proof. So David and I waited in her office for a half hour. The whole time, he held me and I wept. It was as if I already knew that something awful was happening.

We were given an appointment with a pediatric neurologist for that afternoon. There’s nothing like a hysterical mother in a pediatrician’s waiting room to make things happen. She wanted to get rid of me – and fast. We had a few hours to kill, so we walked to Gymboree and bought Zach some onesies, socks, and a fleece outfit for the winter. A week before, I had been a normal mother of a normal child who would shop for infant clothes or take my baby to the playground with the sense that all was right with the world. But now I found myself in a fog. Socks seemed poignant. The onesies made me want to cry. I started bargaining with God. Please, let it be nothing. Let there be some logical explanation, I silently pleaded.

The moment I saw the pediatric neurologist – a man in his 50s with salt-and-pepper hair and thick glasses – poke his head around the corner and motion us into his office, I knew we were in good hands. “Let’s take a look at him,” he said, laying Zach down on the examining table. And whenever in my life, whatever moment in the future I wonder whether there’s a God, I will think back to this: Zach, who had been having these episodes once or twice a day, had an episode right there on the neurologist’s table. I watched the doctor’s kind face, his eyes, and whatever glimmer of hope I’d held on to that this would be nothing faded away.

“We’re going to do an EEG this evening,” he said, calling in his nurse, arranging for a technician to come into the office after-hours.

There is a transparent veil that separates the healthy from the sick, the good life from the one that goes suddenly and terribly wrong. In any given second, that veil can open up and swallow you. Of course, most of us never think about this, because if we did, we wouldn’t get out of bed. My little family and I went through that veil, like Alice through the looking glass, on that brisk fall evening.

After Zach was taken in for his EEG, a long time went by before the doctor called us back into his office. He wasn’t smiling. He pulled his chair around to the front of his desk so that he was sitting near us.

“Well, we’ve got our answer. And it isn’t the one we’d hoped for,” he said. And then he gave us the diagnosis: infantile spasms (I.S.). Something we’d never heard of, a rare seizure disorder that affects about seven out of a million babies. The statistics were impossible to comprehend. When you find yourself on the wrong side of a statistic like that, the whole world does a spin around the moon. Gravity shifts.

“What does this mean?” asked David. I was holding Zach. His hair was greasy from the goo they use to conduct the electricity for the EEG. He was sleeping, and he looked peaceful.

“We don’t know,” answered the doctor. “We know very little about this condition.”

“What’s the worst-case scenario?” asked David.

“Brain damage,” said the doctor.

David’s face seemed to disintegrate, caving in with terror and grief.

The doctor immediately turned to treatment options. There were basically two: His first choice was Vigabatrin, a drug that had not been approved by the FDA, even though it showed quite a bit of success in stopping the seizures. The doctor recommended Vigabatrin as the first line of attack because the only other option, a steroid given by injection three times a day, was a far worse choice. He described it to us as sheer hell for the parents.

Before we even knew what was happening, his nurse was on the phone to a pharmacy in Canada, which would send us the drug by Federal Express within a couple of days. In the meantime, the nurse had also called another family in our city who had a child on Vigabatrin. The parents agreed to lend us some, and we said we’d drive by to pick it up in an hour. We pulled up to their building, one I had passed a hundred times before, and David took the elevator up to their floor, where a woman met him at the door with an envelope containing a week’s worth of the drug.

That night, Zach started taking the Vigabatrin, which was a powder we sprinkled on his food. Within two days, his seizures were almost entirely gone. Within a week, they had ceased completely.

We went online and tried to find out everything we could about infantile spasms. There have been few studies on I.S., none in this country. The most comprehensive studies were in Finland and Norway. The information was bleak.

Nearly all babies with I.S. are diagnosed between 6 months and a year. The condition itself is finite – it goes away as suddenly as it came, provided that there’s no underlying cause. But the seizures themselves cause grave problems presumably because the resulting electrical activity damages the developing infant brain. The stories I read on the web were of babies who weren’t walking or talking by age 2. Who were blind or deaf. Almost all were mentally impaired. Ninety percent of infants with I.S. suffer some sort of developmental damage, ranging from mild retardation to a complete physical breakdown.

Every night I sat at the computer, willing the Internet to give me different, more hopeful information. I could not find one single story of a complete recovery. The most I could find out was that early diagnosis – along with a quick response to the medication – is the best indicator of recovery. The sooner the disorder is caught, the more likely the seizures will not have accrued to the point where they’re injuring the brain.

A few days into this, it occurred to me that Zach’s pediatrician had never called. No phone call to see how he was doing. No phone call of commiseration, just simply to say that she was thinking of us. This was a doctor who had examined him on the day he was born and who had seen him probably ten times since then. And she just simply vanished. I suppose she was afraid we might be angry with her. I suppose she was afraid we would sue.

As I write this, it’s six months later, Zach has just turned 1, and I am a believer in miracles. Zach has been seizure-free since going on the Vigabatrin. He is crawling, pulling up, cruising, and saying “Dada” and “Mama”; he’s a smiling, perfect handful of a baby boy. He is still on the medicine, which we give him five times a day, but he will be weaned off it slowly, starting soon.
His neurologist has called this a “save.” He believes that Zach is going to be one of the rare lucky ones. All underlying causes have been ruled out. Zach has had an MRI and a huge amount of blood work done. There is simply nothing wrong with him. We will never know why he got infantile spasms. There are theories ranging from the DPT vaccination to pesticides to something congenital. The truth is, nobody knows.

There are a lot of factors that have to do with Zach’s recovery – and even as I think “recovery,” I catch my breath. It will probably be years before I am truly able to rejoin the world of “normal mothers.” Will I ever sit on a park bench next to other mothers, watching our children play in the sandbox, and feel that I am one of them? I don’t know. I certainly hope so. But there will probably always be a part of me that will shiver over Zach.

He was responsive to the medicine, which was a piece of luck. And apparently we caught it early. But when I think of those two weeks when I was calling his pediatrician and listening to her dismiss my concerns – clearly she thought I was a hysterical mother, that all mothers are hysterical mothers – I am filled with rage. On the one hand, this is a rare condition, and it’s understandable that she would have deemed it unlikely that a baby in her practice would have I.S. After all, the odds are about seven in a million.

But on the other hand, Zach’s symptoms – slightly slowed development, the seizures themselves at precisely the right age for the onset – should never have been dismissed. And she dismissed them. With a wave of the hand, she nearly relegated my son to a life of pain and profound difficulty. If I saw her on the street, I don’t know what I would do.

So I am doing what I can by telling my story. Trust your instincts. If you believe something is wrong with your child, get it checked out. Don’t be polite. Make a fuss. Do whatever you need to do to be heard. Doctors do not like to make referrals. It isn’t good for their standing with their HMOs. I can only put it this plainly: If I had listened to my doctor, if I had waited until Zach was 8 months old before looking deeper into his condition, he most likely would be braindamaged. This beautiful, curious, intelligent little boy would have had his life forever compromised.

I was raised to be a good girl, to be polite and accommodating, especially to authority figures like doctors. But of all the things I have ever done in my life, the thing of which I am most proud is standing in the middle of that doctor’s waiting room with tears streaming down my face, demanding that my baby be seen by a specialist. I may have looked like a lunatic. I may have appeared to be hysterical.

But on that day, I saved my baby’s life.

Paula Michaels is a pseudonym. The writer is a novelist and an essayist.

http://www.myspace.com/preventvaccineinjury

2008-08-09T21:42:00.003-05:00

Sometimes I really get weary inside, fighting this war that I have waged against...well, everyone, or so it seems like sometimes. I have knowledge of things that sometimes I wish I could forget. I have information that I want to scream outloud to everyone, and I try, but sometimes it feels like my voice gets caught up in a big gust of wind, and I go unheard. Jenny said it best: "I have figured out what happened. I have answers, and I am running around pounding on doors yelling that I have figured it out, but no one is listening because they don't believe me." But Jenny is still fighting, and so am I. And it's worth it. Each and every parent that takes another look at vaccine info after reading my blog, makes it worth it. If you are someone who is still in doubt about what I am saying, I have a simple challenge for you. Google the word Simpsonwood. That's not a tough request. It's one word. A mere eleven strokes of your keyboard. After that, visit the link that I have posted at the top of this page. No matter what you do, please look at this page. It's inspiring, to say the least. Moving, heartfelt, and educational. http://www.myspace.com/preventvaccineinjury

Don't take her away....

2008-07-30T22:21:00.002-05:00

Video by Angela Utley, Mother of a beautiful, vaccine injured child.

It's not the actual vaccines, it's the perservatives!! Like I've been saying...

2008-07-27T22:42:00.000-05:00

This is why I insist that the best way to vaccinate is to split the shots up! Individual doses equal less perservatives, which equals less chance of having a vaccine injured child. We CAN have the best of both worlds. We need to vaccinate, but we need to do it in the least harmful way. It's worth the hassle. It may save you and your child from a lifetime of heartache.

Genesis suspendes vaccines after an infant dies

2008-07-05T18:09:00.000-05:00

> http://www.wqad. com/Global/ story.asp? S=8613656& nav=1sW7
>
> Childhood vaccinations suspended at Genesis pediatric clinics
>
> Posted: July 2, 2008 09:19 PM
>
> Updated: July 3, 2008 02:55 AM
> Genesis suspends vaccines for children
> by Kia Carter
>
> QUAD CITIES -- Wednesday all Genesis Medical Center Pediatric Clinics
> suspended their use of childhood vaccines. The decision comes after a
> baby received routine vaccinations on Tuesday, then died several
> hours later at home. Genesis Health Group says its suspending
> pediatric vaccinations merely as a precaution until the cause of the
> baby's death can be determined.
>
> Tuesday morning a 4-month-old baby boy came to the Genesis East
> Pediatrics Clinic in Silvis for a routine checkup that included
> several vaccinations. The seemingly healthy baby boy was brought in
> for a "well baby" visit, that's a check up that includes routine
> vaccinations like pneumonia, and DPT, which is for diphtheria,
> pertussis (whooping cough) and tetanus. Then Tuesday night his
> parents found him dead with no obvious cause for his death. Now all
> childhood vaccinations at Genesis clinics in Silvis, Bettendorf and
> Davenport have been temporarily suspended. A Genesis spokesman says
> hospital administration have no reason to believe the vaccines caused
> the baby's death, but they want to be overly cautious.
>
> "They'll be a coroner's examination of the baby and we'll get a
> report. At that time we'll most likely resume our vaccinations,
> because we don't think there was a link between them and the child
> passing," says Craig Cooper, Genesis Health Group spokesman.
>
> Genesis has also sent the batch of vaccines the boy received off to
> the Food and Drug Administration and to the makers of the vaccines
> for testing. This is the first time Genesis has ever suspended
> pediatric vaccinations at it's clinics. We'll continue to bring you
> the latest as Genesis finds answers.
>

I find it interesting how they suspended the vaccines, however deny that the vaccines had anything to do with a healthy baby suddenly dying.

AAP Fights Informed Vaccine Choices

2008-06-24T22:14:00.000-05:00

AAP Leadership Fights Informed Vaccine Choices
by Barbara Loe Fisher
w ww.vaccineawakening .blogspot. com
www.NVIC.org
www.StandUpBeCounted. org

In another fit of pique aimed at the growing number of
vaccine-educated parents questioning pediatricians about the safety
of vaccines, the largest private medical organization representing
medical doctors treating children - the American Academy of
Pediatrics (AAP) - recently announced to its membership that it will
fight doubting parents in their offices, in the media, on the
internet and through a partnership with other wealthy and powerful
organizations funded by a pharmaceutical industry committed to doing
the same thing.

On May 30, the AAP leadership reports that it met with the leaders of
15 allied organizations in Elk Grove, Illinois to discuss the growing
refusal of parents to vaccinate their children according to
recommendations of the Centers for Disease Control (CDC) and AAP. A
recent letter to AAP members stated:

"The group agreed that recent attacks on vaccines have left parents
confused. The rates of exemptions are climbing, and the protection of
communities from vaccine preventable diseases is in jeopardy.
Participants identified several factors that promote anti-vaccine
information:

Parent-to-parent spread of myths,
A public that does not understand the risk of
vaccine-preventable diseases,
Internet and media exposure that is not balanced,
Decreased trust in the government and health care providers,

Slow response to negative news coverage, and;
Increasing calls for philosophical exemptions.

The group recognized strategies that have worked in the past to
address these drivers, agreed to jointly promote the positive value
of vaccines, and will come together again in July to develop a
cohesive message for dissemination. This message will be disseminated
in mainstream media, through professional organizations, and via
Internet tools. Materials are expected to be available by fall 2008.
The group will formally be known as the Immunization Alliance."/

Information on the AAP website gives pediatricians instructions about
what to do with parents who refuse to obey the doctor's orders,
including a sample letter that states:

"By not vaccinating your child you are taking selfish advantage of
thousands of others who do vaccinate their children, which decreases
the likelihood that your child will contract one of these diseases.
We feel such an attitude to be self-centered and unacceptable. We are
making you aware of these facts not to scare you or coerce you, but to
emphasize the importance of vaccinating your child. We recognize that
the choice may be a very emotional one for some parents. We will do
everything we can to convince you that vaccinating according to the
schedule is the right thing to do.

However, should you have doubts, please discuss these with your
health care provider in advance of your visit. In some cases, we may
alter the schedule to accommodate parental concerns or reservations.
Please be advised, however, that delaying or "breaking up the
vaccines" to give one or two at a time over two or more visits goes
against expert recommendations, and can put your child at risk for
serious illness (or even death) and goes against our medical advice
as providers... .such additional visits will require additional
co-pays on your part. Furthermore, please realize that you will be
required to sign a "Refusal to Vaccinate" acknowledgement in the
event of lengthy delays.

Finally, if you should absolutely refuse to vaccinate your child
despite all our efforts, we will ask you to find another health care
provider who shares your views. We do not keep a list of such
providers nor would we recommend any such physician."

Educated parents of America attempting to make informed, voluntary
vaccination decisions for your children be warned: your pediatrician
is out to change your mind about vaccination or teach you a lesson
you will never forget.

Hang on to your child because the doctor you have trusted with your
child's life might just try to make you out to be a bad parent and
not only throw you out of the office but notify state officials to
charge you with child medical abuse if you don't agree to give your
child every one of those 69 doses of 16 vaccines that doctors working
for the Centers for Disease Control say all children from birth to age
18 must get.

Be prepared that the doctor, who you pay to keep your child well, may
dutifully obey recent orders given by the AAP leadership to implement
one-size- fits-all government vaccine policies: no questions asked.
The next time you visit your pediatrician and attempt to ask a
question about vaccine reactions or suggest your child get fewer or
no vaccines (especially if your child has already suffered serious
vaccine reactions your doctor refuses to recognize) be prepared to be
humiliated, harassed, threatened and thrown out of the office.

The message from the AAP leadership to vaccine-educated parents is:
you WILL give your children every vaccine that industry produces even
if it brain damages or kills them. You DO NOT have the human right to
protect your child from vaccine injury and death because you MUST
sacrifice your child for what AAP and government officials have
decided is the "greater good." Your child does NOT belong to you and
if you don't agree to do exactly what we say, we will make sure your
family is denied medical care.

Sounds like a smart plan to me, pediatricians of America, if you want
to fatally compromise the last remaining shred of trust that mothers
and fathers have in your knowledge about vaccine risks and how to
minimize them for the children they love more than anyone in the
world.

In the words of Jim Carrey: "How stupid do you think we are?"

Twenty-six years ago, the co-founders of the National Vaccine
Information Center came to the table with the AAP leadership to talk
about compensating children injured by mandated vaccines because the
AAP said it was a matter of "simple justice for children." We
believed the AAP leadership really cared about minimizing vaccine
risks for the individual child rather than just wanting to pass the
National Childhood Vaccine Injury Act of 1986 for the purpose of
protecting drug companies and pediatricians from liability for
vaccine injuries and deaths so they could continue to implement
one-size-fits- all vaccine policies. Time and time again over the past
quarter century, the AAP leadership has demonstrated that they
betrayed the trust of parents then and now by refusing to work with
parents to minimize vaccine risks.

In 1982, it was far easier to sweep vaccine injured children under
the carpet because 1 in 6 American child was not becoming learning
disabled and 1 in 150 child was not regressing into autism. Today,
there are so many highly vaccinated children who are sick and
disabled that there is no place to run and no place to hide.

The vaccine safety and informed consent movement has been led by
educated middle class mothers and fathers who DO know how to tell a
bad scientific study from a good one; who DO know how to calculate
the amount of mercury or aluminum in a vaccine; and who DO know the
difference between being told a lie and being told the truth about
vaccine risks.

AAP: we are not stupid. We will not stand by and watch our children
and grandchildren become vaccine damaged because you are obsessed
with forcing every child to use every vaccine that Pharma produces
with no concern for protecting the children who cannot use every
vaccine safely. You can deny us medical care and try to take away our
human right to voluntary, informed consent to vaccination but you will
never win the war you have declared on millions of vaccine- educated
parents in America.

The Rally

2008-06-11T21:13:00.000-05:00

Relief. Anger. Hope. Devastation. Wow. These are just a few words to try to describe a moment in my life that is truly indescribable. The Green Our Vaccines Rally in Washington DC on June 4th was one of the most amazing events that I have ever participated in. Thousands and thousands of parents gathered in honor of their vaccine injured children in order to make a statement to the CDC and the government that the current vaccine schedule is Too Many Too Soon for our kids. It was amazing to gather with so many parents who know what kind of road that I have been traveling since KC was diagnosed with IS. Most of the kids are autistic, so it's a bit different, but it's the same in the fact that we KNOW that it was a vaccine reaction that hurt our kids, and we spend so much time screaming that at the top of our lungs, but all too often our voices go unheard. With each and every parent that I saw, I felt a bond. When we gathered at the capital, I could not help but cry. The song Not Ready to Back Down, by the Dixie Chicks was playing over the speakers, as thousands of people stood, clutching to pictures of their beautiful, vaccine damaged children. It was absolutely devastating to see so many families that have been affected. And it was utterly amazing to know, that even for just one day, our voices would be heard. I put my son on my shoulders and danced as the tears swam in my eyes. I saw signs made by parents with pictures of their children before vaccines, and after. It was as if someone took the very soul out of them. One mother said it best. The pic of her son smiling with light in his eyes was titled "What God Made". The next pic was her son, glazed look in his eyes, hands floppy, was titled "What Man Made."
There were several keynote speakers, including Robert Kennedy Jr., Dr. Jay Gordon, Jim Carey, and Jenny Mcarthy. The facts discussed were ones that I have heard before, but it never ceases to amaze me. For instance, the children who are diagnosed with Autism often RECOVER or regain many skills when they are treated for heavy metal poisoning. Yet the AAP (American Academy of Pediatrics) does not recognize this as a form of treatment for Autism. In 2001 the CDC claimed to have removed all mercury (thermosal) from vaccines, and since the autism rate has not gone down, they believe that this is plenty of evidence that vaccines do not trigger Autism, therefore no more research is done. They fail to mention that by "removal" of mercury, they mean "less" mercury, and what they call trace amounts is actually toxic if eaten in fish or drinking water! At the time of the mercury "removal" there was a change in the process for reporting Autism. It became mandatory to report cases of Autism spectrum disorders, therefore the statistics that we are relying on to protect our children are not consistent! A child receives the same dose of a vaccine at 8lb that a man does at 200lb. As many as 75% if SID's cases occur within one week of vaccinations.
I could go on and on. And I will. I will continue posting info as often as I can. Please watch the video's of the rally that I have on my page, or just go to You tube and search Green Our Vaccines. Again, this is NOT an anti vaccine group. It is a group promoting safer vaccines.
At this point, the biggest tragedy that I can see in the future is those Mothers who see this info, read about the rally, or in some other way are warned about vaccine dangers, but ignores it and her child becomes damaged. She will never forgive herself. Trust me on this. This is something that will hurt in ways you never imagined. And it never goes away. Open your mind, and research all sides of this issue before forming your opinion. And above all, listen to your heart.

2008-05-27T12:41:00.001-05:00

No more research...

2008-05-27T11:44:00.000-05:00

The government released a policy statement last week stating that there would be no more funding allowed to research the possible link between vaccinations and autism. It's interesting to me how this comes in the wake of the first court case in which the courts conceded that there WAS a link in one paticular case between the vaccines the girl received and her autism. The powers that be argue that this does NOT mean that vaccines cause autism. My questions is, if they contributed to the regression, does it really matter if the vaccines were not 100% to blame? Is it really even about blame? The CDC, and government keeps crying "It's not our fault...it's not the vaccine's fault." I want to scream...it's not about fault! It's not about blame! It's about making vaccines safer. No matter the reason. To stop researching now is just a slap in the face to all of the parents out there who have THEIR science and research in their homes, autistic, suffering. How many "casualties" must we have before we stop waging war against the parents of vaccine injured kids, and start working with them.

2008-05-18T22:28:00.000-05:00

Stay Tuned

2008-05-17T22:48:00.000-05:00

I've gotta tell ya, I've got some things to say about vaccine safety. But it's late, and I'm tired, so please check back tomorrow!