Mary Jo Silva was reading last week's column about reports from the 1990s linking autism and immunizations when she came to this paragraph about a vaccine reaction in August 1994:
"Low fever, much discomfort. Patient laid in bed and cried and moaned; three-four days post-vaccination, rash traveled over patient's body and lasted at least one week. Within six weeks of vaccination patient was observed as losing previously gained language and social skills; diagnosed autistic."
The patient so clinically summarized in that report, Silva realized with a start, was her 1-year-old daughter Carmen, who fell ill the same day she got the MMR -- measles-mumps-rubella -- and Hepatitis B vaccinations at age 1.
Convinced the shots triggered Carmen's illness and subsequent slide into autism, Silva filed a report with the U.S. Vaccine Adverse Event Reporting System on Aug. 5, 1996, and soon after Carmen was formally diagnosed with autism. Her case was given VAERS ID Number 88924.
Silva's report linking vaccinations and autism is one of 83 filed between June 1991 and June 1999 that have been reviewed by Age of Autism. In July 1999 the Centers for Disease Control and Prevention in Atlanta urged manufacturers to phase out a mercury-based preservative called thimerosal used in many childhood vaccines as soon as possible.
A year-and-a-half earlier, concerns about a possible link between autism and the MMR vaccine -- which does not contain thimerosal -- had been raised in a scientific paper written by a British doctor, Andrew Wakefield.
Neither of those issues was on the radar when Silva's report and most of the others were filed, making them a unique window into a time when a growing number of parents and medical professionals first became concerned -- based on their own observations -- about a possible link.
That doesn't mean they were right, but the timing adds a certain independence to their observations: It cannot be said they were swayed by activist parents or maverick doctors or lawyers looking to cash in.
Today, the CDC and other medical experts dismiss concerns linking autism to thimerosal or to individual vaccines such as MMR. They -- and the prestigious Institute of Medicine, part of the National Academy of Sciences -- have concluded that well-controlled studies have ruled out vaccinations as the culprit in a huge rise in autism diagnoses in the 1990s.
Silva said her eyewitness experience convinces her otherwise.
"It was quite emotional for me to read Carmen's report in this article," Silva wrote in an e-mail message. "Over the years many people have told me that I am wrong, and on some occasions I have even doubted myself. But, when I see that it has been 9 years since I filed a complaint and the debate is still in the early stages, I become enraged over all the innocent little kids who have had their bodies assaulted by this government-regulated child abuse."
Silva now lives in the Cayman Islands with her husband, Roberto, and their daughters Anna, who is 9, and Carmen, now 12. She is convinced Carmen's autism resulted from an autoimmune reaction to which she -- and also Anna, whom the Silvas chose not to vaccinate -- are predisposed.
Here are more comments from her e-mail messages:
Carmen's files are full of immunological tests that show an autoimmune profile. This is what is significant to Carmen's regression several weeks after her vaccinations. I think there (is) a large group of kids that react immediately to the mercury. I know many parents who swear chelation (giving children drugs to pull mercury from their body) has been the answer, and removing the mercury has given them great result. But, I do believe that Carmen regressed as a result of an autoimmune reaction to her vaccines -- not as a result of mercury toxicity to her system. It is possible the assault of mercury to her body at the same time as the MMR could have set this up. Therefore, an autoimmune reaction would not be immediate, but instead would develop over a period of weeks.
It is true that Carmen is a healthy child. Especially since we moved here. She does not have many of the health issues seen in autism. She did have some allergies, but nothing severe. What we see in Carmen is a strange blood disorder that has no explanation. She has macrocytosis, and was diagnosed as such when her WBC (white blood count) kept falling. Again, it goes back to her immune panel.
So, she does have some of those issues, but she has remained healthy. We hold our breath though. She has also been on depakote (a medication used to treat bipolar disorder) since she was 5 for an abnormal EEG with spikes in her temporal lobe in her third stage of sleep. She is not one of these kids that is always suffering from intestinal problems or experiencing chronic pain. But, she also can't tell us what hurts.
She also has hypothyroidism that was diagnosed when she was 10. She had all the classic signs of that, like poor circulation and loss of hair. But, her health improved tremendously once that was treated.
We did the gluten-free/casein-free diet for a couple of years. When we took her off gluten her self-injurious behaviors completely disappeared, and she had been biting herself over 30 times a day. We have kept her milk free for about 10 years, but she still enjoys an occasional piece of cheese or some sour cream. Milk definitely makes her crazy.
So, those are a few things that are consistent with the autism diagnosis. Her immune panels match those of what the autism docs see in autism. We traveled all over the United States seeing docs that offered so many different things. It seems she got healthier, but it never did anything to alleviate the autism.
When you look at a graph of the explosion of autism since the 1970s, you will see an increase around 1978. This was when First Lady Roslyn Carter started the "Every Child By Two" vaccination campaign. I believe that removing the mercury will result in significant decline in the cases of autism as we are seeing them today, but I also believe there are other assaults on the immune system from vaccination -- non-mercury related -- that can cause autoimmune reactions leading to autism. The statisticians will have a real debate on their hands. But, as a mom I know what I know.
I filed the VAERS report myself. To give you just a bit of history, when my second daughter was born in 1996 I took Carmen to an allergist. I told him I was not going to vaccinate my newborn because I had reason to believe that Carmen had been affected by her vaccinations.
He supported my position and told me that I should file a report with the CDC. He felt that someday there may be a connection made between vaccinations and brain injury and if I had a report on file before the initial allegation was made it would make my case even stronger -- that no one would be able to accuse me of jumping on the most recent bandwagon.
An interesting story here: I have a friend who about four years ago had a little girl suffer a drop seizure and then have a few additional seizures after that. It was very mysterious, and no one knew why they were happening.
I asked her if she had any vaccinations, and my friend said she had a few at the doctor's office about 10 days before the first seizure. I told her to mention this to the doctor and see if he thought there was a connection. She did, and he didn't. But, while she was in the waiting room she read the insert from the MMR vaccine that clearly stated that seizures can occur around 10 days post-vaccine. He wouldn't file the report with VAERS. I think most docs don't want to see a connection. They don't want to admit that this is not as safe as they have been assuring people.
I heard from VAERS for the first two years. They sent follow-up cards to see if the injury was still there. The first reply said that Carmen was mentally retarded. I had them change that to autistic. After that I never heard anything.
I filed with the National Vaccine Injury Compensation Program, too. I never expected it to go anywhere, but I wanted it documented. I was past the statute of limitations for the MMR, but since she had the Hep B on the same day I filed under the Hep B. It was dismissed because all the documents I submitted pointed to the MMR.
Again, it comes down to ... kids are normal ... kids get sick after shots ... kids regress into autism. That shouldn't be happening.
My husband asked me to tell you that Carmen is a very lovely young girl. Cayman has been fabulous for her. She loves the Caribbean Sea and snorkels in it almost every day. The sea has been just as good for her as any sensory integration, occupational or physical therapy she has ever had. She attends a wonderful government school here where she has lovely and dedicated teachers. She loves to draw pictures, and she is a wonderful cook.
I just want to put a little person into that VAERS report you read.
This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: firstname.lastname@example.org