By Kent Heckenlively, Esq.
My daughter’s new virologist is a charming man and I think we’re going to be great friends. He also thinks I’m completely wrong about vaccines and autism, and in my daughter’s case, seizures.
Between the opposing poles of these two statements is the hazy outline of what I believe is an evolving dynamic which is not yet fully understood.
Let me back up a little so you can fully appreciate the story.
About six weeks back I was given the name of a woman who had approached Generation Rescue. She has a foundation which is working on the theory that the Human Herpes Virus #6 (HHV-6) is the cause of chronic fatigue syndrome. This woman’s foundation often talked with the world’s top virologists who privately tell her their belief that HHV-6 is also implicated in multiple sclerosis, autism, and seizures. She didn’t have time to pursue HHV-6 in regards to autism, but thought we should be made aware of the theory.
As the father of one child who was snatched from the spiral of autism, and one who is still severely affected, I know there are great possibilities as well as many dead-ends.
The kicker in this is that a commonly available drug, ganciclovir (Valcyte, not Valtrex) appears to be highly effective against HHV-6 over a six-month course of treatment. I was also told that I should use a specific lab to do the PCR testing, as most other labs didn’t have the necessary sensitivity in their assays.
I approached my daughter’s neurologist with this idea and she gave me a referral to a virologist. My wife and I took our daughter, Jacqueline, to see him, along with her voluminous medical records, and after about twenty minutes he said, sure, let’s give it a try. As an added bonus, he agreed to use the lab I suggested.
To make a long story short, the blood got drawn, but it went to the wrong lab which screwed things up so badly they didn’t even get a result. In the meantime we’d already started the drug, and we’re starting to see some changes, but I’m not ready to tell anybody this is the answer.
But we’re still back to not having a blood result on viral levels. The doctor was very apologetic, promised to make things right, but then was called away for two days of meetings.
That’s when I decided the best thing for me to do was simply go down to his office at lunch, and in the nicest way possible, park my ass there until we got this wrapped up. I think he was a little surprised by my presence, but he seems to be a thorough man, and this situation greatly bothered him. “It’s really good you’re here,” he said. “Let’s both go down to the lab and get this situation worked out.”
The last time my daughter had her blood drawn the lab didn’t understand that they could send it to an outside lab, which caused the mix-up. (In their defense, it was a Friday afternoon.)
I wasn’t there to talk about vaccines, autism, and seizures. I just wanted to get a blood draw and have it sent to the right lab. But as we waited for the lab personnel to call the lab back east and figure out that their hospital group had used this lab before, the virologist couldn’t help talking to me about vaccines.
In what he thought was the nicest way possible he was letting me know that vaccines didn’t cause my daughter’s problems. I just smiled, then replied, “Well, the number of sick kids we have today is unprecedented.”
At which point he just smiled and nodded and we waited. He said he was happy to hear my reports that my daughter seems to be tolerating the medication well and having a lessening of seizure activity, then he went back to the vaccines.
I told him about my son Ben going mute for twelve days after a vaccine, and us getting him back because on day three I read Karyn Seroussi’s book on the gluten/casein free diet, and put him on the diet. It took Ben a year to catch up to his peers in language and two years for his sensory problems to be resolved. Now seven-years-old, Ben is at the top of his class academically, plays soccer, has lots of friends, and is a clear teacher favorite.
The virologist smiled and nodded and we waited. I asked about his kids and he talked about them, and then he started talking about the vaccines again. “I’m not against vaccines, doc,” I told him. “I just think they need to be given safely.”
That seemed to reassure him for a moment, and he said, “Well, that sounds like something we can agree on. You don’t sound like one of those people who wants no vaccines.”
“Actually, doc, I’m supposed to be one of the worst, and I just think going back to the 1983 schedule when autism was 1 in 10,000 instead of 1 in 150 sounds like a great place to start. Doesn’t seem like anybody would be putting public health at risk with that approach, am I wrong?”
He smiled and nodded, and was about to say something else when the lady from the lab came back and said everything was settled. The hospital would draw the blood and send it to the outside lab which had been recommended to me by the woman from the HHV-6 foundation.
“The lab you wanted is a good one,” the virologist told me. “A colleague of mine in Sacramento has used them before and we talked about it.”
“That’s great,” I replied. “I’m coming up with these ideas, but I’m counting on you to tell me if anything I propose is unsafe, or if a certain lab doesn’t have a good reputation.”
He thanked me, and we started to leave, and he wanted to talk to me some more about vaccines and autism . . .
I felt like the neighborhood bad boy who keeps getting pestered by little Miss Goody-Two-Shoes. After a while it’s clear that Miss Goody-Two-Shoes is interested in nothing less than taking the bad boy home with her. I really wasn’t interested in talking about vaccines and autism. I just wanted to get a viral test for my daughter. However divergent our opinions on other issues, getting a viral test done should have been all we needed to talk about. All told I must have spent a half-hour in this passive-aggressive back and forth about vaccines and autism.
So what do they think about us? We must present them with a conundrum, and I believe the truly caring medical professionals are honestly puzzled. They’ve done all their tests and can’t give us any answers. But they don’t believe what we are saying.
And yet, just like little Miss Goody-Two-Shoes, they can’t seem to walk away from us.
Kent Heckenlively is Legal Editor of Age of Autism