A little bit of a misunderstanding

My post the other day about parents giving up their autistic children got some attention. I won’t tell you who in particular paid attention to it and even threatened to kill me because, like many such cowards who say those things and then hide behind First Amendment guns and “Second Amendment Remedies”, giving him more attention only inflates one ego in the discussion. Instead, I’d like to give attention to a reader who would like to remain anonymous because he is not a public person, but he is an avid reader (or so he says) of the blog. He also has begun to re-think his stance of vaccines as a causal agent of his child’s autism. This person sent me the following e-mail:

“Mr. Gaines. I want you to know that I’ve been reading your blog for a while and I find it very informing. Even with your snark and coarse approach to dealing with vaccine skeptics like me you still manage to teach me a new thing once in a while. You’ll be happy to know that I’ve now given my child the two MMR shots because he was exposed out here in Cali. He cannot affort (sic) to be sick from measles right now, and, even if vaccines did cause his autism, how much more damage can the MMR do? I do take offense to your post about wanting us autism parents to walk away from our children. How dare you? The system could never take care of our children like I do. I work a part-time job so I can stay home and take care of [redacted child’s name]. I am a loving parent, and I will never ever ever ever give him up. He is not dead to me either. I hope you reconsider your stance on wanting me to give up my child cause I wont.”

If you pay attention to all the hints I’ve left on the blog, you can figure out how to email me. Continue reading

The Price of Quackery

What follows is part of a consent order from a state’s board of physicians to a physician under their jurisdiction. I’m not a physician, so I will give this physician the “professional courtesy” of not criticizing his practice of medicine, much. Instead, I’m going to quote for you a part of the order in which one of the cases under this physician’s care is described. In my opinion as someone who has always worked hard to be professional in work, and as a regular human being, the case described in the order painfully exemplifies what happens when parents of an autistic child are out of options and are sold a bill of goods by practitioners of alternative medicine.

Before we go any further, please be advised that the description is painful to read, and I can imagine it would be especially more painful to read to parents who have lost a child or have struggled with a special needs child. If you are interested in obtaining the whole order, please leave a comment with your real email in it, and I’ll tell you how to get it. It is publicly available, but you have to search for it.

This is the description of “Patient 5” in the order. The “Respondent” is the physician against whom the order has been written. Words in brackets [] are my clarifications of terms; parentheses () are part of the actual order.

“Patient 5, a male, had a history of ASD [Autism Spectrum Disorder] with severe self-injurious behaviors (“SIB”) including eye injuries (detached retinas). Patient 5’s parents brought him to the Respondent for alternative therapy; he had been on multiple psychotropic medications without success.

The Respondent conducted three in-person visits of Patient 5, beginning on October 27, 2011. Additional encounters included telephone and e-mail consultations. The last documented encounter was a telephone consultation on January 17, 2012.

The Respondent treated Patient 5 with various supplements, dietary changes, Zithromax, LDA [low-dose allergen therapy] treatments and Lamictal [a seizure medication].

The Respondent elicited a detailed history during his initial visit, but failed to conduct a physical examination of Patient 5.

On October 27, 2011, the Respondent prescribed Lamictal to Patient 5.

The Respondent initially treated Patient 5 with LDA on October 29, 2011 (“LDA #1”). He failed to conduct any allergy testing prior to injecting Patient 5 with the LDA treatment.

LDA is not an accepted treatment for ASD.

Since the FDA [Food and Drug Administration] does not regulate LDA it must be compounded individually. The composition must be specified for each patient use.

The Respondent failed to document a specific prescription for Patient 5 for the LDA.

On December 11, 2011, Patient 5’s father sent an email to the Respondent noting that Patient 5 had shown no improvement and had worsened in some areas. The Respondent recommended stopping the Lamictal.

On December 19, 2011, the Respondent documented that LDA #1 had helped for one week. Patient 5’s school was reporting difficulty with his management. The Respondent administered a second LDA treatment on this date. He also provided Patient 5 with a prescription for Zithromax with one refill.

On December 29, 2011, Patient 5’s father stated in an email to the Respondent that Patient 5 had experienced increased agitation, outbursts and SIB after giving Patient 5 a six pill package of Zithromax noted in paragraph 80 [above].

On January 4, 2012, the Respondent participated in a conference call with Patient 5’s school staff. There had been an increase in Patient 5’s aggression including throwing furniture, destroying property and SIB. Patient 5’s school recommended an in-patient stay based on safety and learning problems. The Respondent recommended that Patient 5 be provided a homebound instructor as he needed to be with his parents.

On January 17, 2012, the Respondent documented a telephone consultation with Patient 5’s father, stating in part that Patient 5 had been discharged from school, that he had discussed two new supplements (VSL3 [probiotics] and methylfolate [a B vitamin]) and that the family was considering a trip to Africa. The Respondent documented that the plan included VSL3, “if stable” methylfolate and zinc. The Respondent mailed a prescription for methylfolate with six refills issued to Patient 5. The Respondent had further documented that the plan included “LDA” and consideration of additional supplements on the next visit scheduled for February 14, 2012.

The Respondent failed to include signed informed consent forms in Patient 5’s record indicating that Patient 5’s parents were aware of the risks of the alternative therapies he was prescribing.

On February 29, 2012, Patient 5’s father sent the Respondent an email telling him that Patient 5 had died while in Africa.

The Respondent failed to meet appropriate standards of delivery of quality medical care of patient 5 in violation of [regulations].”

It was very hard for me to read this, re-read it for comprehension, and then transcribe it to this blog post. The board of physicians ordered the “Respondent” in question to pay a fine of $5,000 and to not administer any more chelation or anti-fungal medication as part of his alternative approach to treating symptoms of autism. His license was also placed on probation, but he is allowed to continue his pediatric practice. To me, this seems like a slap on the wrist, especially after reading the other cases in the order. If a healthcare provider keeps prescribing medication off-label and without evidence of it working, then that person needs to be in some other profession. Again, this is my opinion.

However, I’m not a healthcare provider, and I do not know all the specifics of all the cases.

Still, what happened to “Patient 5” in Africa that he ended up dying? Was he taken there by his parents for alternative treatment, a vacation, visit relatives?

And how did the school react to the recommendation that Patient 5 not be treated at an in-patient facility? That is, did anyone else advocate for him besides his parents and the “Respondent”?

Again, if you want to read the whole order, leave a message and make sure to include your real email in it. I will not disclose that email to any third parties under the commenting policy of this blog.

Return of the “Zombie Children”

I’m not a parent, and I can’t pretend to know what a parent feels toward a child. I figure that it is something very clos to what I feel for my arm. That is, I love my arm and I want nothing to happen to it, or to my brain, or to my heart. Parents, for the most part, love their children as if those children were literally a part of them. An argument can be made that children are an extension of the parent. So I completely understand the distress that a parent would feel when they see their child being disabled or otherwise unable to live a “normal” life.

Then again, there really is no “normal.” There is a spectrum of normal, like there is an autism spectrum, and a spectrum of sexuality. Some children are on one end, and they have lives that none of us would ever even bother to get to know. Other children have neurological conditions that delay their development, and we cringe when we think of those children. (Except for those who’ve dealt with those children, like some of my readers.) We cringe because we think it must be a horrible way to live, and we think so from the outside. We’re not there to celebrate even the smallest accomplishment of that child, or to smile at the “antics” that a child with special needs will perform, especially those antics that are against the expectations for a child with special needs.

Yet there is a subset of parents of children with special needs who continue to call their children “dead.” Within that subset are parents who blame that “death” on vaccines, and, when those two parts of the Venn diagram of denial come together, the results can be sickening. Continue reading

The aimless

I see them every morning on my way to work, a group of kids who are not heading to school that day or any other day. If they were heading to school, they’d have books with them and be dressed for it. They certainly would not run on and off buses, or openly steal a bicycle that wasn’t tied down to something. But maybe I’m just biased.

One sector of the public has stated that these “hoodlums” are beyond repair. They are of the opinion that these children should be rounded up and thrown into jail, and that those in jail should stay there since — in their view — they are a threat to “western civilization”. I’m not joking.

Another sector of the public blames all sorts of things for the behavior of these kids. They blame Wall Street, the White House, Congress, the 1%, the police, the courts. They blame anyone and everything but these kids for their behavior. As if the moral compasses that are found in every human being are missing in these kids. They refer to them as automatons, mere criminals who can’t help to do what they do.

I take a different approach. I see these kids and see that they lack a role model, a good leader. The “alpha male” in the “pack” is a bad seed. They are not being led or influenced by people of good. The people of good have abandoned them.

Just the other day, on the bus, the leader began to harass an older man. The leader started yelling at the old man, cursing at him and mocking him for being old. The man just sat there with a silent strength. The other kids followed the leader in making fun of the old man. People on the bus nervously looked at each other. As it turns out, an off-duty cop got on the bus and scared them away, but not before they laughed one more time at the old man.

How would these same kids react if their leader decided that they were going to help the elderly instead of mock them? One can only imagine. That’s why I’ve come to call these kids “The Aimless”. They wonder around, jumping on and off public transportation, walking up and down the street, not necessarily to commit crimes or cause trouble. They just meander about without any goal for the day. there doesn’t seem to be an aim to their actions.

Imagine for a second that we collectively decide to treat the problem of crime and lack of education — because these kids are most definitely not going to school — imagine if we treated these things like we treat public health problems. Imagine if those two politicians arguing over each other right now on their quest to be POTUS decided that they were going to use their power and position in society to provide these aimless kids with a reason to live.

Yeah, imagine that. And what if we threw our resources at putting these kids in school and, for the older ones, to work and learn? Heck, I’d just ask one of the “Super PACs” to give 1% of the money they’re putting toward getting their candidates elected to a YMCA, Big Brother/Big Sister club, after school program in any of our inner cities. Just 1%.

Sadly, too many in power at all three levels of government don’t see this as a necessity. See, they don’t ride public transportation with me. They have their own drivers or high-end cars. They fly past us with their police escorts. And things don’t change “down here” while they are living well “up there”.

So, on top of everything else I have going on all over the place, I’ve decided to help the aimless. Gosh, I’m such a softy.

How some choose to deal with loss

One of the recurring themes that I see in the world of conspiracy theories is that of loss and revenge. The conspiracy theorist has lost something or someone, and they do their own “research” in order to get back at whatever or whoever wronged them. There are also other conspiracy theorists that, although they’ve lost nothing and no one, will take it upon themselves to be the heroes.
You all know my policy on not naming any names on this blog. But that doesn’t mean I can’t link to their stuff, or to examples of their stuff. So hold on for some scary stuff.

Exhibit A in this thesis is the man profiled in this story from the Seattle Weekly. This man’s story is a sad one, really, because he lost a baby girl about 14 years ago. The girl died, from what we can tell in the story, about a day after receiving the hepatitis B vaccine:

“Lyla, who died a day after receiving the Hepatitis B vaccine shot 13 years ago. He wails in the song: ‘That evening, she stopped breathing/Her face turned blue/Oh Lord, her face turned blue.’”

Wait. A song? That’s right, he wails in his song because the man in question has built a top-of-the-line private recording studio in his home in order to make songs about vaccines. Actually, they are songs about the horrors of vaccines:

“[He] sees his band, pointedly called the Refusers, as akin to the antiwar protest-music bands of the ’60s and ’70s. The group’s music combines a toe-tapping, funk-rock beat with lyrics meant to convey the Nazi-like horror—as he and his allies literally portray it—of this country’s vaccination policies. “Vaccine Gestapo” is the name of one song. In a music video for another, his daughter Viola (also completely unvaccinated) portrays a scared Alice-in-Wonderland figure being chased by a mad doctor wielding a needle.

Because doctors chase children around to get them vaccinated, if and when they can get away from the long days at the office or the hospital, apparently.
So the man in question lost a daughter, and he vehemently blames the hepatitis B vaccine despite evidence to the contrary:

“Yet it soon becomes even more apparent that there are a lot of unanswered questions about his portrayal of Lyla’s death and its aftermath. Asked, for instance, if he is sure that the medical examiner talked to Merck before switching her assessment of Lyla’s death, he says: “I think so. I told her to.” In other words, [his] allegation is based on nothing more than his own suggestion to the examiner, prompted by his suspicions about the vaccine. He’s also not sure, now that he’s asked about it, whether it was the examiner or, as seems more likely, the police who came to his apartment looking for evidence of child abuse. “I don’t know . . . somebody . . . don’t ask me,” he says. Most crucially of all, [he] says he doesn’t know where the pediatrician’s notes are that prove that the examiner initially determined that Lyla had a swollen brain. “You have to take my word for it,” he says. Later, asked whether he would consent to having the case file from the examiner’s office released to Seattle Weekly, he declines. “To me, it’s a very invasive and intrusive request,” he says, questioning the Weekly’s “fixation” with Lyla’s death. “To me, it’s not the story.””

Oh, but it IS the story, very much. His rants and raves and songs about the evils of vaccination fall on the ears of those who can be swayed away from vaccines, placing them at higher risk for life-threatening – or at least harmful – infections. His evidence for his beliefs are based on his daughter’s unfortunate death. Yet, he doesn’t want to provide any supporting evidence?
Look, I know that it is very hard to lose a loved one, let alone a child. I don’t know this first-hand, but I have been in plenty of situations personally and professionally where someone loses a child. It is heartbreaking, awful. It’s like a personal hell, and I don’t doubt that he has gone – and may still be going – through it.
What I object to is his crusade against an enemy that just doesn’t exist. None of the assertions about vaccines made in his media have been proven, not by independent scientists, not by government agencies, and not by the epidemiology of sudden deaths in children. There is just no evidence to what he claims.
But he’s not the only one.
Exhibit B: There is this woman. Of course, she has her own anti-vaccine blog as well. Hers is also a story of loss, although not at the levels seen in “exhibit A”. This woman is the mother of an autistic child. She describes her situation thus:

“I am the mother of a child who regressed into autism following the simultaneous administration of the DTaP, Hepatitis B, Polio, HIB and Pnumo (sic) vaccines. When I discovered that none of the vaccines My son received that day had been studied for their relationship to autism, and that my pediatrician’s opinion that his vaccines did not cause his autism had no basis in science, I began to investigate and document the vaccine-autism causation theory and other vaccine injuries.”

So, again, we have a parent who is convinced that their child was injured by vaccines. She is convinced about it to the point that she seemingly has devoted her life and her career to promote the anti-vaccine agenda. You can head over and read the rest of what someone in the comments rightly pointed out to be a severe pimping of her book. (Aside: Dr. Offit writes a book and it’s “conflict of interest” this and “Big Pharma shill” that. This lady writes a book and she mentions it ad nauseum in a congressional hearing.) Unfortunately, many parents of autistic children are convinced that they have “lost” that child and will do and say almost anything to seek revenge on those who caused it.
If you don’t believe me that they truly think their child is somewhere between dead and dying, even if all they have is autism, take a read at exhibit C and his blog:

“’Look at me!’ I said hoping to end the tantrum, turning him so his face was in front of mine, but his eyes stared off to the side. ‘Look at me [child]!’ and he refused. This sent a chill up my spine. Not that I knew anything about autism, it was because this just wasn’t like him. I remembered noticing his lack of eye contact when his cousin was with us for the week. I thought that was just him having his feelings hurt and being jealous. But this was different, I was suddenly aware that I was attempting to break him, break his will and instead it broke me. I sobbed uncontrollably, something is wrong, this isn’t worth it, just let him bite, do anything he wants. I left the room, I left him to work it out on his own. I left him to run away. A little later he came into my office where I was hiding my shame, my self doubt, my heartache. He came in and climbed up into my lap and loved me. I cried so hard it made my wife cry. In the 9 years we have been together she has only seen me in this state 3 times, once for reasons I don’t want you to know about, this time when I had the come to Jesus with myself and the last time months later when I knew [he] was autistic… or something.”

The feeling of loss is palpable in his commentary. It really is. This discovery that his child was not neurotypical led this father to crusade against vaccines, as he was convinced that the hepatitis B vaccine his son received at birth and a few months later – since it is in a series – were to blame for the son’s autism. You can continue to read his posts, which suddenly stopped almost three years ago. You can read about his efforts to find out what happened to his child and who was going to pay for it:

“With new statistics coming out showing that the true number of children with autism is close to one in one hundred it is today that we need to pick up our weapon of choice and fight autism with every ounce of strength we have, but not alone, with others, within our community there are warriors of incredible strength and providers of impenetrable armor, find them, link hands and attack, attack as if your child’s life depended on it.”

Note the theme of loss: “(A)s if your child’s life depended on it”.
On the opposite side of the spectrum are the parents of children who have died from whooping cough and are now fighting hard to remind everyone that the vaccine is a safe and effective way to prevent whooping cough. They have made their campaigns very public, and they have taken all sorts of abuse from the anti-vaccine crowd.
For example, the parents of Dana McCaffery have been on the receiving end of harassment by one of Australia’s most rabid anti-vaccine people and organization. I am proud to write little Dana’s name because she should be the one we name, the one we remember when dealing with loss. She died a horrible death from whooping cough, a disease that suffocates you. And hundreds of children just like her are dying of whooping cough, a vaccine-preventable disease. Her parents, instead of being angry and vindictive, have taken it upon themselves to stop this from happening to other families.
Sadly, they are not alone in their loss. Thankfully, they are not alone in their purpose.
Of course, someone is going to accuse me that the death of one child doesn’t override or make less the death of another. The death of one child by whooping cough does not take anything away from exhibit A’s loss. The actions of exhibit A do. You can choose to make something good happen from the loss of your child, or you can choose to be angry and vindictive to the point of spreading misinformation and fear about a safe and effective way to prevent more loss. It really is your choice… But it will have consequences beyond your control.