By Kent Heckenlively, Esq.
I’m really very ecumenical when it comes to trying to figure how to help my daughter, Jacqueline. All I want is something that works.
The gluten/casein free diet worked for my son Ben after he went mute for twelve days following the vaccinations at his eighteen month check-up. He’s seven-years-old now, completely neuro-typical and at the top of his second grade class. It was this experience which radicalized me on the issue of vaccines and negative neurological reactions. He has received no further vaccinations.
The gluten/casein free diet didn’t work for my daughter, though, who was already three and a half years into seizures and autism. That experience taught me there was so much more I need to learn and as a result I’m always interested in new ideas. What works for one child may not work for another. But something should work for every child.
And so it was that I was intrigued when I was given a contact at the HHV-6 Foundation and told that many of their experts believed HHV-6 was involved in autism and seizures. Of even greater interest to me was the assertion that a commonly available medication, ganciclovir, was effective at treating HHV-6 infection with a six month course of treatment. I was told to use the world’s best lab to detect HHV-6, Viracor, if I wanted to get an accurate reading.
After one blood draw went awry and we finally got a sample to Viracor, three weeks after starting on ganciclovir. On Friday I got the result back. It was 100 copies, a weak positive reading.
Curiously, though, she showed no antibodies to HHV-6, suggesting an immune system issue. This puzzled our virologist until I mentioned again to him our belief that autistic children are immune-compromised. He acknowledged my point, but I don't think he believes me yet.
So, what are the possibilities? After three weeks on the medication maybe it’s done a pretty good job at knocking the virus down? That is a reasonable assumption and to me the most likely one. I’m seeing some clinical improvements, but she often seems to have an up and down cycle over a month, so I’m not breaking out the champagne just yet.
To his credit, our virologist understands that we’re following a faint trail, but one well worth pursuing at this time. In another month we’ll redo the test. If the next test comes back and it’s 50 copies, we can reasonably assume that before we started the medication she had significantly more than 100 copies in her system. We’ll know, or if it's like many things we've pursued in the past, the answer will be murky.
And then there’s another avenue I’ve been pursuing, hormone levels. We all know that autism affects the boys at a 4 to 1 ratio against girls, but the girls seem to be much more severely affected. Jacqueline fits right in with the sorority of Hannah Poling and Michelle Cedillo, who have both autism and seizures.
Jacqueline has been working closely with Dr. Amy Yasko, who suggested getting an Estro-Essence: Complete test from Genova Diagnostics. The results were intriguing. Her testosterone levels are about six times higher than normal for a girl, her tetrahydrodeoxycortisol is about twenty-five times normal, her tetrahydrocortisol is about three times normal, her hydroxyl-corticosteroids are twice normal, she doesn’t have detectable levels of estriol, or of human growth hormone. We’re adjusting her supplements based on this information.
The hormone profiles of Jacqueline and some other girls show elevated testosterone, which might result into them holding on tightly to mercury. Jacqueline has been undergoing a relatively mild chelation protocol for about three years, getting a lot of aluminum out (80 times normal in one test), but not really much mercury. In addition, her clinical changes have been slow.
And now in addition to viruses, hormone levels, and heavy metal retention comes the mitochondrial angle suggested by the case of Hannah Poling. I’ve been trying to assess how to get those tests done, and whether at the age of nine, they’ll give accurate results. (There’s some evidence to suggest the mitochondrial tests are most accurate when the child is under the age of five.)
I’ve often been called an optimist, but I prefer to think of myself as a pragmatist. The simple fact is that something is medically wrong with our children. We have pieces of the puzzle, but even when things go right we’re not quite sure how they fit together.
Could it be that the metals suppress the mitochondria, which affects the immune system, which allows for persisting viruses, which also throws off hormone levels? It sounds plausible, but I don’t know if it’s true. Maybe it's a different chronology, or there are pieces I don't even know about as of yet, that I should add to the the equation.
All I know is I’ve got a nine-year-old daughter who still can’t speak, but the light in her eyes and broad smiles when she sees me lets me know there’s a person in there every bit as smart as her brother Ben.
I offer these anecdotes not as a complete picture, but as clues which others might be able to figure out better than your humble correspondent.
None of this is destiny. It is only a challenge. Good hunting, my friends.
Kent Heckenlively is Legal Editor for Age of Autism.