All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident . Facts are stubborn, and refusal to accept them does not avoid their inexorable effects-the tragic consequences are now upon us - Hellen Keller. The time has come for everyone to step up and be an advocate for our children. It is no longer enough to simply ask questions. We need to demand answers.
Tuesday, December 2, 2008
Friday, November 21, 2008
Article on Senator Daschle and Vaccines
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
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
Saturday, November 1, 2008
Trick or Treating Fun
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!
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!
Friday, October 31, 2008
A Very Happy Halloween
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!
And Gran sure is happy....
And Mommy has a lot to smile about...
Because.....
KC's EEG was NORMAL!!!
Happy halloween everyone!
Thursday, October 23, 2008
I will dream new dreams...
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'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.
Monday, October 6, 2008
It only takes two words...
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.
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.
Sunday, October 5, 2008
I lost the key...
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...
Monday, September 29, 2008
Reflecting....
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.
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.
Sunday, September 28, 2008
Hello, my name is Autism.
"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....
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....
Wednesday, September 10, 2008
Letter to Questcor
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
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
Friday, August 29, 2008
Believe in him with me....
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.
Tuesday, August 26, 2008
Just thought you might like to know...
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
... 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
Wednesday, August 20, 2008
Heartbreak and Hope
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
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
Sunday, August 10, 2008
A story that is close to my heart
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.
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.
Saturday, August 9, 2008
http://www.myspace.com/preventvaccineinjury
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
Wednesday, July 30, 2008
Sunday, July 27, 2008
It's not the actual vaccines, it's the perservatives!! Like I've been saying...
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.
Saturday, July 5, 2008
Genesis suspendes vaccines after an infant dies
> 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
> byKia 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.
>
> 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
>
> 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.
Tuesday, June 24, 2008
AAP Fights Informed Vaccine Choices
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.
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.
Wednesday, June 11, 2008
The Rally
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.
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.
Tuesday, May 27, 2008
No more research...
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.
Sunday, May 18, 2008
Saturday, May 17, 2008
Stay Tuned
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!
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