Friday, March 7, 2008

It's Not Our Fault!!


photo credit-eatmeatnow
creative commons license


Thanks to S.L. for putting up a link to the Poling news conference on the CNN website.

Kristina Chew has detailed this case (the case that some claim links vaccines to autism, but most see no such "concession" by the government) here and here.

As I watched the news conference, I became increasingly frustrated, and then angry. You have this high power couple (he a neurologist, she a nurse turned lawyer) who obviously aren't hurting for money. Even if they haven't made it big yet, they certainly would have been able to provide for their daughter (as well as their two other kids) without the government settlement. So why did they feel compelled to go forward with this case? One thought kept coming back to me. I could almost here mom say,

"We've been cheated!"

"We had a nice, NORMAL, daughter. We were supposed to have a summer house on the Outer Banks, ski in Colorado every year, and in general be a power couple". Now mom didn't really say those things, but that's what I understood her meaning to be.

The mother did say "Hannah needs constant one on one supervision" and "My husband's heart broke when he realized his daughter might have autism". Meanwhile, the camera pans over to show a cute, well behaved 9 year old interacting with two people over on the side. And I can't help but feel sorry for this girl, who will grow up with the story that she was "damaged" by vaccines, but the parents got the evil government to pay. How she was "normal" before this (despite her genetic mitochondrial disorder-which the parents never mention), but now she is damaged goods. Supposedly mom (Terry Poling) also has a mitochondrial disorder, but has no outward signs.

Maybe mom feels guilty about "causing" her daughter's "autism", and wants to make sure that no one in their circle of friends will blame her. Perhaps she's thinking, "The government admitted it! They're the ones that did this to us! We're just like you, really we are."

I find this rather sad.

The money from the government will assist the Polings in keeping up the lifestyle they feel entitled to. They can point to the government case to "prove" that they are truly a "normal" power couple who were done wrong by their own government. And poor Hannah will always be identified within the family as "damaged goods", because that's the only way that mom and dad can keep up the pretense that everything is fine.

Meanwhile, they obviously have no concern regarding the effects on public health in this country. When the next pertussis or measles outbreak occurs because of them parroting the nonsense that vaccines cause autism (which will certainly further decrease vaccination rates in this country), will they feel the least bit guilty? Or will mom look to "help" those moms who lost their kids to vaccine preventable diseases by becoming the lawyer that encourages those parents to sue the government, too?

Here's my unsolicited advice to the Polings:

OK, you pulled it off. You managed to tap into the financial largess of the US government (which means the rest of us are paying for this). Once you get your check, do us all a favor (especially yourselves) and just stop talking about this. Because I know that you'll never publicly admit that you were wrong, that Hannah had a genetic disease that something was bound to aggravate, and it just happened to be a fever that may have been caused by vaccination, but nobody really knows.

And I know that if you get stuck in the "pity party" and blaming others that you'll never come to truly accept and love Hannah as she is. You may think that trying to constantly trying to "fix" your daughter is the best thing you can do for her, but she will tell you later how devastated she was that you never accepted her for being her. Let go of the anger you feel, or it will disintegrate your family. The rest of us will take the extra 5 years to undo the damage you've done, and educate the American public that vaccines really don't cause autism. Just take the money and go away.

-------------------------
Addendum: Three other posts that give great background on this are Steve's, Emily's, and S.L.'s.

35 comments:

Anonymous said...

As one of the many people that has been trying to get by on the horrendous joke known as SSI since my teen years, I say they shouldn't even take the money, and it's disgusting that they went for it. The idea that it's important for our government to keep up the luxurious standard of living they're accustomed to disgusts me, considering people like Frank Klein end up selling plasma whenever possible to get by and states like mine (California) refuse disabled/elderly our tiny cost-of-living adjustments at a time when prices are skyrocketing. Somehow I don't think that Frank, Amanda (Baggs), or others on SSI trying to educate the public are less deserving of a nice lifestyle because the public doesn't want to alter the workplace enough (or deal with 'defective' people) to let us support ourselves.

Sharon said...

Do you really think they will go away though? Won't all the anti-vaxers be desperate to wheel them out at every opportunity as proof that their tactics can work?

My pity is all for the beautiful little girl, who is being spoken of so negatively in public. She's a gorgeous and happy looking child in that video clip, who deserves to be cherished and protected from all this horrid talk.

Camille said...

Thank you, I couldn't have said it better myself. So many of the leading lights of these parents are upper middle class white people dripping with a sense of entitlement who secretly long for the days when one could just send a defective kid away no questions asked.

Terry Poling strikes me as shrill and not beyond lying to make her point, which is "its not my fault!!!!" Maybe they can name a cemetery after her if a vaccine preventable disease wipes out a bunch of children in the next year or so.

Casdok said...

Great post.
Im afraid i havent been following much of this as i find it all so sad and frustrating. As you say people do need to let go of their anger and accept their wonderful children for who they are and enjoy them.

Jeni said...

Camille took the words right out of my mouth about your post - you said, so succinctly too, exactly how I was feeling reading, learning about this latest "development" (for lack of a better term) pertaining to the autism-vaccine link!
The SSI thing, while it is helpful, is still a major joke too particularly for those who rely on it for their sole form of income. My daughter & SIL recently started receiving SSI for their 4-year-old daughter -PDD-NOS -but they have to provide monthly income reports to SSI in order to receive it. Here's my SIL, currently laid off to boot, my daughter works part-time -barely managing to eke out enough for basics and they with income of less than $40,000 a year, five children they support and they have to qualify for the SSI on a month-to-month basis and yet, a neighbor, whose brother is disabled, whose parents both work full-time (Father earns over $25 an hour) receive SSI with no questions asked about earnings. What's wrong with a picture like that? Just so many issues, problems, messed up govt. programs too!
Keep plugging away with your blog. Who knows, maybe someday someone will discover it and understand fully what you and so many others have been trying to explain.

Maya M said...

Excellent post.

Club 166 said...

These two parents seem to embody all that is bad about law and medicine.

A lawyer who will use the law as a club to protect her own narrow self interests, and a doctor who ignores science, and puts all kids in danger.

Of course they are seen by many as just being "concerned" for their child, whereas this all reeks of them being concerned about themselves.

The father will find, if he lets himself be trotted out by all the purveyors of woo, that he will not have a legitimite academic career. He may become a big "DAN!" doctor (I thought they weren't supposed to use that designation anymore), but true scientists will shun him. So the best he can hope for is to slink away quietly, but I'm pretty sure that "mommy dearest" won't allow that to happen. Publicity is like cocaine to a lawyer-they can't get enough of it.

Joe

CS said...

"The father will find, if he lets himself be trotted out by all the purveyors of woo, that he will not have a legitimite academic career."

Do you think this already occurred? He left his post at JH some years ago for private practice citing more time with his family but I can't image that an academic post is more time consuming than a private practice neurology office. What is it about JH anyway, isn't that where Geier was as well?

Marla said...

I doubt they just take the money and be done with it. I see them building a foundation and helping other people sue or fight to prove that vaccines are the cause. God willing, I am wrong!

Anonymous said...

Club 166,
Doctors who are honest serve the interests of their patients better than those who poison babies with mercury.

Club 166 said...

Doctors who are honest serve the interests of their patients better than those who poison babies with mercury.

I agree!

Honest doctors study studies scientifically, and don't try to bend a situation to fit preconceived notions of "damage by mercury poisoning".

Fortunately, I don't know any doctors that are poisoning babies.

And BTW, anon, you must have missed the memo (perhaps you live in flyover country-we're always 3-5 years behind the times). Mercury poisoning is so over. We've even jumped over aluminum and formaldehyde to "it must be mito disease triggered by vaccine induced fever".

Joe

Anonymous said...

If mercury poisoning was over, the autism epidemic would be over.

Club 166 said...

Like I said, anon, you missed the memo.

Kirby and the rest are past that. Time to get with the times.

Joe

Anonymous said...

Kirby does not speak for me. He needs to pay attention to those of us who know more about it than he does,

Emily, as some know me said...

Anonymous, you're a hoot. An embarrassing hoot, but a hoot nevertheless. Now, when it's people who appear to have the sense to know better, that's not so much of a hoot. A Hopkins MD neurologist? I'm thinking he probably knew and knows better.

I've seen some dumb things lately, but the quote from Anon up there pretty much tops them all. For what it's worth, none of my children received shots with thimerosal, yet...there we have the autism. Guess that their role in the "epidemic" didn't quite end with the exclusion of mercury from the equation.

Reminds me a great quote from the Onion regarding mercury and autism: "I am unmoved by these findings. The amount of scientific evidence I've made up in my mind is too significant to refute." That must be how you know "more about it." The rest of us just can't read your mind. Or apparently, even learn who you are.

Niksmom said...

Excellent post (as always!), Joe. And you've eve garnered your own little troll, too, it seems. Nice work! ;)

Joeymom said...

I don't know about a private practice neurology office, but I can speak to the time an academic post inhales. ITs not a go-home-at-5 type of job. Just the teaching itself can be a full-time gig, plus there are committees, advising, research, and working with students on projects, writing, and the classwork. Most academics I know spend a solid 80 hours a week working, often more. Having family time is something reserved for winter and spring breaks (if you aren't grading work). Consequently, I know a huge number of academics who are unmarried- some never, some divorced. And many of the full-timers I know who are still married are married to other academics.

Club 166 said...

Joeymom,

Physicians (like most professionals) work more than a standard 40 hour work week. Both private practice and academics work similar hours (between 65-80 hours/week).

Private practice doctors make (a lot) more money, but academics lead more interesting lives. :)

Joe

misha_k said...

I've been loathe to follow this situation. The whole deliberate spin that been put on this case makes me head hurt.

I agree with everything you say and Camille has summed my thoughts up very nicely.

Lenora said...

Poling has an interview up on WebMD. His story there doesn't sound much like what I've heard about the press conference. Maybe you can judge.

kristenspina said...

Great post! Thanks for this. It is all so sad. My heart breaks for this little girl, and it is simply unbelievable to me that any parent could or would put their child through this. You have a wonderful way of summing it up and I agree (passionately agree!!) with all the points you make.

Daisy said...

Fabulous post. Great advice to the family, too: acceptance of their daughter as she is will change their lives for the better.

Anonymous said...

As much as I appreciate you have probably followed this case and have maybe made some good assumptions, I don't think you've gotten to the heart of the issue. In other words, I'm not so sure this is just about a couple who thought they could have it all, only to realize they can't. I, too, am very suspicious why this particular couple won their case....I'm beginning to think it has more to do with the research that will begin to be funded, that is the real story behind the case.

I have a daughter with a diagnosis of mitochondrial disease. I know at birth she did in fact have signs of mito dysfunction. I also know after her 2 month vaccinations she began high pitch crying, tremors, and a very strange swelling over her left eye. Come to find out at 3 months she had unexplained encephalopathy, or inflammation of her brain. I've always known my daughter's condition has been a combination of genetics and enviornement. I've never been anti vaccine, but knew, truly knew that my daughter could not handle them. She is very medically fragile. The American Pediatrics Assoc. even had a policy at one time that a child with unexplained encephalopathy should not receive vaccinations. Yet, every pediatrician we've been to, has recommended we follow through and have her completely immunized. I realize I'm not able to explain all the details, but what I wanted to express, was that I don't even think this is just about Autism, my daughter does not have autism. It is about what can happen if certain children, due to genetics, enviornment, mitochondrial health, immunity related problems, get bombarded with vaccinations. We have so many unknowns, and we've been every where looking for answers for my daughter. I'm not one to get on a bandwagon. I do not want or have ever wanted compensation for my daughters condition. Having said all that, again, I think we do need to know why the govt. conceded this case, sealed the information and expect us to not want to know anymore?

Club 166 said...

Anon,

I am not an expert on mitochondrial disease, and agree that there seems to be a need for research into them.

Two points, though.

One, the Polings could have very easily come out with mito disease pins on their clothes, but they didn't. They came out cloaked in the biggest darn autism puzzle pins (paperweights?) I have ever seen. And all they talked about was vaccines causing autism (not aggravation of pre-existing mitochondrial disease by a fever which might or might not been related to vaccination). Their lawyer is a vaccines cause autism guy.

Second, they made no mention of mitochondrial disease, or the (very important) fact that the mother also has mitochondrial disease. I guess they knew that people might not be so darn sympathetic to someone who hit the jackpot for having a genetic disease which can be triggered by any stressor (such as the ear infections that Hannah also had).

Which is not to say that we, as a society, provide enough support to those with special needs. We don't. But crying wolf (claiming that vaccines caused autism in an otherwise healthy child), rather than being honest and saying that your child had a rare genetic condition that was aggravated by something, and no one can prove what, hurts the cause of science and learning.

The public was just starting to come around to accepting that thimerosal in vaccines has nothing to do with autism. Now this case (which is not related to the vast majority of other autism cases) raises anew hopes and fears of millions of parents across the country. And the bottom line is that we may have to deal with epidemics before we get this straightened out again.

Lastly, not all children should be vaccinated. There are some that doctors agree should not. But if I had a child with mitochondrial disease, I would make sure that I had the opinion of two doctors knowledgeable in mito diseases (and my child's particular case) before I proceeded. Then I would proceed if they said to, as putting them thru the stress of getting one of the diseases that vaccines protect against is not a pleasant prospect, either.

Thanks for your comment.

Joe

Anonymous said...

Joe,

I'm very interested in corresponding with you on this issue so I hope you will bear with me, and my lack of knowledge about autism and vaccines - in general. I cannot really explain why I'm so interested, other than to say that I want to be an informed parent for my daughter.

I wanted you to know that we've been to three different mito specialists within the U.S. All of them have recommended my daughter have vaccinations. This is based on the premise that her already compromised system could be devastated by measles, chicken pox, etc. One of her doctors was involved in the research that apparently "helped" the Poling case. In fact, there is a publication that this doctor wrote, along with Jon Poling, about mitochondrial dysfunction, autism and vaccines. Which is why I am so dumbfounded right now. And, I can only assume the goal of the lawsuit was to fund more "mito research".

In recent days, I have read that thimerasol (spelling?)is known to "kill" mitochondrial cells? I know nothing about this and if you do, please feel free to enlighten me. Like I mentioned before, I've never been anti vaccine, nor have I researched theories on these issues. My "hairs" are up now, however, as some of the puzzle for my daughters condition may be in the process of being identified.

Here's the thing I can say about mito.....it's not an easily defined condition. People with mito dysfunction are different than those with mito disease. Disease means there is regression and typically a more known path for the illness. Mito dysfunction, however, is often called secondary mito, which ultimately can be caused by genetic sydromes, toxins, viruses, and on and on. We don't truly know whether my daughter has primary or secondary mito. She doesn't fit into any sydromes, and has multiple medical issues. I've been frustrated with the "mito" diagnosis, because of it's variability. Some people with mito only have exercise intolerance. Some children die very early. Some like my daughter, cannot walk, talk or eat on their own. The negative nelly in me, believes that we are all walking around with mitochondrial defects (aging is known as a process of dying cells.)

I'm certain I'm not making progress to a point. But I did want you to know that within the mito world there is great confusion and the United Mitochondrial Disease Foundation has just put out a statement that until scientific evidence suggests otherwise, all children with mito should be immunized. Which has me frustrated to no end, WHAT evidence was there, than, to grant the Polings a win? What scientific evidence was presented? If I had to guess, I would say that in a few days, an announcement will be made that the gov't has agreed to fund research for mito disease/dysfunction, I don't know, maybe autism? to study these issues further.

As for my daughter, I have kept her home. She is seven. She has a teacher one hour a week come to the house for school. We also have PT twice a week in our home. I am aware that the risks are there for her to contract a serious illness. It is not a good place to be. She did go on to have every shot up to the 1 yr vaccinations. She had another bad reaction from the DTap, and that is when we stopped all together.

I had hoped to send her to school or some modified school setting. She loves to be around other children. My intention would be for her to have her vaccinations, if we placed her in a school. This whole issue is very timely for us and I am hopeful that more information about the decision is disseminated.

As for the Polings, I will say that I've now seen several press conferences and they have in some cases been silent on issues, and in others seem to explain their position better. I had read once, also, that the judge, along with sealing the documents, set limits on what they could say? I dunno.

The confusion continues. Thank you for hanging in there with me.

Emily, as some know me said...

Holy cow. The NYT reports that Poling was a *resident* at Hopkins. He wasn't an academic at all. He was doing his neurology residency. Most people leave where they are when their residencies end and find employment elsewhere. But it probably makes a better story to say that he left his academic job at a great place like Hopkins all for his little girl.

That explains a lot...he's only 37, she's nine, so they had that child when he was 28...and he was supposed to have already achieved "status" at JH? That'd've been kind of a record...the standard, earliest timeline is out of med school at age 26, out of a residency like neurology at age 30 or 31. That guy was simply finishing his residency.

I don't trust these people AT ALL now--somebody's twisted this story with way too much Machiavellian intent.

Club 166 said...

Emily,

You forgot the Ph.D. Usually adds two years to an MD/PhD program. That would make him at least 32 when he finished his residency.

Joe

Club 166 said...

Anon,

Not trying to put you off, but have you read SL's blog? Her child does not have mitochondrial disease, but she is pretty knowledgeable, as they did a lot of testing and investigation before concluding that her child did not.

The Polings hooked up with a group of hyper vocal people that claim that vaccines cause autism. They fail to change their minds despite the lack of any credible evidence to the contrary.

In the Poling's case, it appears (from what we have seen) that they have no credible evidence that vaccines caused the autistic symptoms in their child. The father admits that in the WebMD article. Instead, (again, from what we know) the court ruled that her underlying mito disease was worsened by a fever, which might or might not been caused by her being vaccinated. Hardly scientific evidence, but evidently enough for one judge in one vaccine court.

Joe

Anonymous said...

Joe,

Thanks for the link to SL's blog. I will check it out.

I guess I'm not understanding the angst toward the Polings? How does an MD/neurologist at one of the top Med schools get swayed by an anti-vaccine crowd? The Polings are from Athens, GA and the top mito specialist resides and practices in Atlanta. I'm just picturing more of a meeting of the minds, than the whole "anti vaccine" community being involved. But then, I don't know who comprises the anti vaccine group either. Thanks again for the link.

Club 166 said...

First of all, he was an MD/PhD neurologist in training at a top medical school (in Baltimore, MD), not on faculty, at the time his daughter was born, and for a few years after. He is now in private practice in Georgia.

The stuff that he was reading during press conferences came straight out of the anti-vaccine playbook. His lawyer is an anti-vaccine lawyer. How they got hooked up, I don't know.

His wife is a lawyer (as well as a nurse). One could speculate that they met while he was in med school, and that at some point she became a lawyer. Perhaps she provided the link (and the driving force) for the direction they took. Only they can answer that.

If they had used their opportunity to cast attention on mitochondrial disorders, I'd still think they were getting away with something, but wouldn't have been quite as upset (as they wouldn't have been setting public health back another 20 years).

Joe

Bink said...

I find myself thinking about the child. What is her life going to be like, now? From what I have read, she hasn't even fit the criteria for autism for years. But, when she applies for college, or applies for jobs, the first thing anyone looking into her background will find will be "needs 24 hour one-on-one supervision" or "needs fulltime care for rest of life." How will she move on from this, as a teenager and as an adult? How can she ever get past this image her parents have put forth of her in the media? It makes me sad.

Oh God, wait. I just figured it out. Her father will open a DAN-type clinic that will "cure" her and allow her to lead a "normal" life (with mom working the legal side, natch.) That's how this will work. Crud. That's it, isn't it? That's it.

Anonymous said...

Hi again,

Gotcha on the med school thing...still, in my isolated world of doctors, we've just never had one "cave" to the anti vaccine crowd, so I guess I was giving him more "status" to have come from John Hopkins and gone that route.

I'll try to view the press conference you are mentioning..I'm thinking the link is above on your blog. The other night on Larry King Live, I was amazed at the contradictory nature of their comments. On one hand they were saying that their daughters condition declined after the nine shots and then the father stated he does not think others should be concerned about vaccines! So, I was very confused. I will look for the other press conferences.

One other thing on the mother's mito. Is this confirmed? I know there is alot of misinformation and initially we were told that the majority of mito cases are maternally inherited. I can tell you that hasn't been proven in my daughter's case and since our diagnosis 5 years ago, I know of many kids without the maternal mito link. But I question the extent of all the "mito" diagnosis, whether the number of cases are true mito disease or whether they are really just mito dysfunction. I am very skeptical of alot of things these days.

The fever issue really bothers me, too. Now, knowing the whole mito thing is so variable, let me just say that our daughter could just be different. But "fevers" in general do not set her back. She's never had a seizure. Her first round of vaccinations did not come with a high fever. The final round (when we chose to stop) did. But neither, time was she hospitalized due to a fever. I'm just not getting the emphasis on why they (mito doctors) have always said it is the fever that is potentially harmful. My daughter requires hospitalizations during times of GI distress, she needs IV fluids to stay hydrated and glucose to keep from going into hypoglycemic distress.

Joe, you've been kind to entertain my thoughts. I do not wish to side track your discussions. I'll continue on my researh of all this until I'm in a position to know what's best for my daughter. Thank you, again.

Club 166 said...

Anon,

You're always welcome here.

I suspect (and this is just an educated guess) that the mito doctors worry about fevers because fever is a hypermetabolic state, where you have a lot more energy requirements. Infection (even without a fever) and wound healing would also fall into this category (though wound healing is much more localized, and probably wouldn't be a problem unless it was a big wound.

I agree with being skeptical of what is reported by the press. That's why I'm so critical of what actually comes out of their mouths at these press conferences.

I suspect (and this is pretty much pure speculation) that some of this "talking out of both sides of their mouths" comes from there being slightly different slants on this by the parents. I see mom as being gung-ho, vaccines are bad, the government is involved in a cover up, etc., while I see dad as going along for the ride, not wanting to rock the boat because there's money in it for them, willing to read the script they handed him at the press conference, but backtracking a little when he actually talks for himself, when he remembers (a little) the scientific method he was actually trained in.

Joe

Emily, as some know me said...

Joe, his CV shows him finishing his residency in 2001. So he was 29 or 30. Very young. He must be quite bright and driven and ambitious. JH has a three-year neuro residency program, according to their Website (!). He was graduated from med school in 1997, also per his CV.

Club 166 said...

Emily,

Yes, I've think you've laid out the timeline pretty well.

I've got nothing against someone being driven and ambitious. I do have something against someone who should (does?) know better twisting facts to further their own narrow self interest, and possibly hurting others in the process.

Joe