Here, as promised in our last column, is an account by one mother of her child's autism. The mother and daughter, Libby and Isabella Rupp of St. Paul, Minn., were pictured with a front-page article in The New York Times last month about the debate over vaccines and autism.
The picture caption reads: "Libby Rupp of St. Paul, whose 3-year-old daughter, Isabella, has autism, says she is not convinced by studies that say there is no link between autism and childhood vaccines that include mercury."
But why isn't she convinced? Rupp says the brief comments attributed to her in the article -- a total of 21 words spread over three sentences and a fragment -- gave no hint of how she came to suspect vaccines triggered Isabella's autism. The article was titled "On Autism's Cause, It's Parents vs. Research."
Rupp also said the article portrayed treatments that she and other parents have used successfully as both ineffective and dangerous. Most controversial: Chelation (key-LAY-shun), a doctor-supervised process of flushing heavy metals out of a child's body.
The theory behind chelation is that if the mercury preservative in vaccines called thimerosal is the problem, removing it is a big part of the solution.
We've now had two immunologists concur that (Isabella's autism) was a vaccine reaction. It was within hours. She was different.
It was her first set of vaccines at 2 months, and then it got worse after every single set of vaccines and then at 9 months, I finally said no more.
She was a kid who had totally normally bowel habits but immediately (after vaccinations) she got diarrhea, and that lasted for a couple of months and she went from being a happy baby to crying all the time. And not just crying, screaming.
She stopped sleeping. She would wake up every 15 minutes all night long. She still does.
Prior to her vaccines she had rolled over repeatedly at six weeks of age. My entire family witnessed this at a big family reunion. It's not just me making this stuff up -- numerous people saw her. She never did it again after her vaccines until she was 10 months old.
She used to vocalize with me. If I would sing her lullabies, she would make noises, and when I would stop singing, she would stop making noise. That went away. We never heard another goo-goo gaw-gaw after that, none of those baby noises.
At two months, it was sort of slowly happening. By four months, she got another vaccine and that is when we clearly realized, Oh my gosh, this kid isn't doing anything. Her DTaP (diphtheria-tetanus-pertussis) at four months had mercury in it.
That's what makes me the most upset -- if they had taken them all off the shelves she would never have gotten it. (In July 1999, the Centers for Disease Control and Prevention and the American Academy of Pediatrics recommended that mercury-containing childhood vaccines be phased out by manufacturers but did not order a recall.)
The other thing is I had the flu shot while pregnant, and again while nursing, so she would have gotten thimerosal from both of those shots. Interesting enough, I had a pretty normal pregnancy until all of a sudden Isabella stopped moving and I had to be monitored every time I was in there (the doctor's). I don't know the exact timing, but I did get a flu shot (about then).
So I have to question whether the thimerosal in the flu shots I got had anything to do with that. I definitely think it would have predisposed her to a larger reaction when she got vaccinated later.
I was very upset because I have doctors who have backed me up on it, yet this (New York Times) piece made me sound like a lunatic, and that I'm hurting my child and just desperate for hope.
It never mentioned, once, the amazing improvement that my daughter has shown on chelation and the metals that were coming out, so much so that the Mayo Clinic was concerned about it.
They never once talked about the fact these kids are actually recovering when you take the mercury out of them. That's where I didn't think it was fair at all. OK, you can report the other side, there are lots of people who disagree with us, but the fact is there are thousands of children who are undergoing this treatment that are getting better.
And the other thing is they flat-out said chelation is dangerous. Our county chelates children with lead poisoning. I have had the county out to my house numerous times. They said if they found a kid with high lead, they put them in the hospital and they chelate them. How is this that dangerous if our county is doing that to children?
We are very open with our doctor at Mayo and have told him that we are chelating. He's said on various occasions that he is OK with that; he doesn't necessarily agree but he is OK with our doing it.
He also has repeatedly said he doesn't understand the improvements my daughter is making -- "These kids don't improve." When we're in there, he is sometimes speechless about the improvements in her and can't explain it from what he's doing. His patients don't improve like that.
He has prescribed supplements like very high doses of B vitamins, Co-Q10, Vitamin C, Vitamin E. My daughter has a mitochondrial disorder, so she takes something called a mitochondrial cocktail which is the commonly accepted treatment for this disorder. It includes alpha-lipoic acid, which interestingly enough chelates mercury. I mentioned that to the doctor; I don't think he knew that.
He told us when we first came down there that he's seen mercury poisoning and this isn't it, but he's repeatedly asked us if we live on a toxic dump, because we bring him our tests and we say, "Look what's coming out of her."
We've been chelating her since she was 15 months old and she is now 4. She just started talking in February. She does imaginative play. She does pretend play. She has empathy. She plays with toys appropriately. She likes to play word games -- if you sing, "Twinkle, twinkle little shoe," she'll laugh. Things that autistic kids just don't do -- and at this stage she's doing more and more typical things.
We've had a dog for her whole life, and before she was oblivious to it, and now she just can't get enough of him, chasing him around and imitating him. She today -- unfortunately -- was licking her foot. I said, "What are you doing," and he was licking his foot. Constantly imitating things. I'm very optimistic, I'm always hopeful, but I never thought I'd see that.
When I tell this to anyone else, their immediate reaction is, "There's mercury in vaccines? Why would they do that?" But when you tell this to a legislator, or to a government official, or a doctor, they'll say, "It doesn't make any difference."
What I don't understand is when you tell the average person this, they're stunned and they're concerned. You tell someone who should know better, and they don't think it's any big deal.
I'm a CPA and an MBA. My husband is an executive. We're not stupid people. That's what frustrating. And even if we were, parents know their children better than anyone. If they think there's a correlation, people should listen to them.
There you have it, dear reader. Make of it what you will. The Institute of Medicine -- part of the National Academy of Sciences -- has concluded that a vaccine-autism link is so far-fetched it is time to put research money into more promising areas. We are told only one scientific study of chelation is under way -- with parents' funding.
That prompts the question of what mainstream science is doing instead to find causes and cures for autism, especially "environmental" causes broadly defined as toxins that come from outside the body.
We will pursue that question in future columns. Before leaving The New York Times to its own devices, though, we must point out the paper has yet to correct several factual errors in its article cited by SafeMinds, a leading group of parents who suspect mercury as the culprit in the autism epidemic.
That includes the spelling of the name of the president of the group, Lyn "One N" Redwood.
We intend to become really annoying and keep bringing that up until the newspaper of record fixes it.