Friday, June 3, 2011

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

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"      I Like this quote I dislike this quoteAnd 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.  

Tuesday, May 17, 2011

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 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.

Monday, May 2, 2011

Book Club

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...

Monday, April 25, 2011

Fun, seizures, and other significant happenings...

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!

Sunday, April 17, 2011

Why the Debate Continues...

 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.

Friday, April 15, 2011

Angry, and a little sad

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?

How to spell Autism 


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?


Unbelief..... 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.


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.


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


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.


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

Thursday, April 14, 2011

Is it too late?

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 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.


A Beautiful Tragedy at