Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

3/10/08

The Parents

My first inclination was to be harsh on the Polings, especially when they practically whispered "mitochondrial" in their public appearances. They wore outrageously huge Autism puzzle bows, I wondered where their mito pins were. I was rather confused, why would they not use a public forum for a disease that needs more resources for a treatment? You see, unlike Autism Speaks, U.M.D.F. doesn't have a flock of fancy celebrities as their spokespeople, they don't have comics and musicians plugging their cause, and they haven't had a film premiere at Sundance. There is a great need for money and resources to continue the studies into mitochondrial disease. All of this, in hopes of saving lives. That's why I was upset. I've known children who have died from mitochondrial disease. Why weren't we hearing about how serious it is, and where the public may donate to such a cause?

Well, I watched the Larry King Live interview with the Poling family. At first, I felt maybe they were tired from a long day. Perhaps the stress and excitement over the media blitz was getting to them. The first segment went by, and there was zero mention of mitochondrial disease. It was all about autism. Let's just say I was doing my own commentary for the show! After the commercial break, at some point, finally the "M" word was said. With each question asked during the interview, Mr. and Mrs. Poling seemed to get a little frazzled. They looked lost. I again figured it was exhaustion.

At the very end of the their appearance, this transpired:

J. POLING: I would agree with almost every word in that statement. In terms of vaccinations, I'm certainly not anti-vaccine. I think vaccines are one of the most important medical developments within the past century-plus.

What we're trying to say, and the theory of what we felt happened to our daughter Hannah, is that she has a susceptibility to injury from stress of vaccination or potentially stress with the mitochondrial disorder of other potential insults. But clearly, what happened with our daughter was following a series of vaccinations that occurred in July.

Later on...

KING: Terry, should a parent watching the show tonight, when the pediatrician says, come in for the vaccinations, should they bring them?

T. POLING: Oh, yes, definitely. There is no evidence that children are like Hannah. We don't know -- we didn't know, actually. I don't know that she had a mitochondrial disorder prior to July 19th of 2000. I had no evidence of it in any biological tests. I don't know if it was the vaccines, getting nine at one time, that caused it.

I'm sure she has a genetic predisposition for this. I don't think that every family member has that. I don't think that every family does. And as everybody knows, there's a lot of children out there that do no not --

SHOEMAKER: Thank you, Larry. I might add that one of the theories we were prepared to present in this case is the fact that mercury in the vaccine that were given back at that time can also lead to Mitochondrial dysfunction. In this case, we do not believe it was a genetic cause. We do not believe it was a cause.

Wait a minute. The lawyer just completely disputed what the parents were saying. Also, it struck me as odd that they are "pro-vaccine." The majority of families in the vaccine cases feel strongly that the shots poisoned their child. Some are for "greening" vaccines, others are flat-out against any and all vaccinations. And, it seemed strange that a family who had gone to court, to blame vaccines, is recommending getting your child vaccinated. I think something significant happened from the time this family sought out DAN doctors to the last few years living with their child's mitochondrial disease.

Something else also dawned on me. Could it be that the Polings have signed agreements with this vaccine-hating injury lawyer? Exactly how many other clients does he have? One look at his website is quite telling (just Google Cliff Shoemaker). If he presents the public with a victory against "big pharma" and "big brother," why he'd have thousands cheering and declaring victory. But, if a term like "mitchondrial disease" were to take center-stage, this concession would mean little to the others wanting their day in court. I just wonder, if there isn't an agreement between this lawyer and his clients.

I've been given information on Mrs. Poling, she was an avid DAN believer. I have nothing to show that she remains one, or that her husband is or was ever. It appears, according to message boards, that her involvement in chelation and DAN supplements began when their child was just 2 1/2. She does state that her child was diagnosed with "mitochondrial PDD" at Hopkins and lists off her abnormal lab results (these are the blood tests that will eventually lead the family to see Dr. Shoffner for biopsy & other tests). She adds how in a mercury article, abnormal lab findings are seen with heavy metal poisoning. She describes the "biological intervention meds" her daughter takes, along with some for her "metabolic problem." Again, this is all before the Mito Complex I & III diagnosis. She lists off the meds, pretty much the mito cocktail (the docs she saw suspected mito, most docs will put a child at-risk on the cocktail prior to testing). They are already doing chelation (at 2 1/2 years of age!) at this point. She was trying to get the Lovaas ABA covered through Early Intervention or the school district as well.

It also looks like when the muscle biopsy results and diagnosis of mitochondrial disease came in, her visits to the boards stopped (last post is 11/26/01, biopsy was done on or after 10/4/01, results generally take 12 weeks). Granted, there are other message board and offline support groups, so they very well might have continued at least some DAN methods. Honestly, if my child had such a debilitating regression (loss of skills, inability to walk, feeding difficulties, etc.), which we know Hannah did, I would be devastated. If the only answers I had were "regressive encephalopathy" and "autism features" from experts, I'd probably buy into the DAN way. How could my child go from one level of functioning, and then within months be so very different? It's also important to remember how convincing DAN doctors are, how their test results appear to connect the dots, and how they very easily sink their claws into people who feel desperate.

One can assume that, after receiving the mito diagnosis, at least some changes have been made to their DAN protocol. The use of chelation no doubt stopped, it's possible her diet had to be altered as well, but the "biomedical medicine" aka mito cocktail certainly continued. So, I am going to be easy on the Polings. I do not agree with the DAN protocol, but I can see how in desperation one would seek them out. I also realize that it's highly likely they have been given a script from their lawyer. It is my hope that sometime down the road, the family will speak out--on mitochondrial disease.

I wish this family the best. I hope that Hannah continues to make progress and grow, and that the physical symptoms of her Mitochondrial Disease do not affect her deeply. I assume at some point David Kirby and others will review the details of the case--both the medical and the legal facts. Hopefully, they'll understand that autism is not mitochondrial disease, and mitochondrial disease is NOT mitochondrial dysfunction. Perhaps in time, they'll clarify that while mitochondrial disease is a debilitating, often fatal disease, autism surely is not.

At some point, they will realize this case is not a victory for them, in fact it's a victory for no one. There are no winners here--not the lawyers, not the anti-vaxers, not Hannah. The Poling family has received money from this case, but their child will always have mitochondrial disease. And that, quite frankly, is nothing to celebrate.

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