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.
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.
Monday, September 29, 2008
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
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