"SOONER" OR LATER: OKLAHOMA AND AUTISM
JENNY McCARTHY'S "GREEN OUR VACCINES" RALLY JUNE 4 IN DC!

BETWEEN A VIRUS AND A HORMONE

OptimistBy 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.

Comments

Erin

Did you take a look at Dr. Klinghart's Autism protocol? It's about 200 slide sheets and really goes into detail on a number of topics, including the vitamin K protocol. He has even success with adults learning to talk. I would give it a try. He also has some videos on youtube where he talks about some his protocols.

quiet in the south

after reading everyones posts it reminds me why I always tell my older NT son who is in research. If you really want to get answers to any problem in medicine go talk to a bunch of autistic parents for a day. Maybe its our aspie brains that give us the ability to think outside the box because you sure don't get these kind of discussions when you go to your "my brain never leaves the box" pediatrician. The parents are going to figure this out.
Have you done a stool test on your daughter? a detox profile testing her phase 1 and phse 2 ? to see why she can't excrete these hormones?
I think so much of the damage starts in the gut and when stumped go back there and work out. its not everything but I am amazed when I talk to parents and they have done everything but not this simple but essential test. bad gut flora can prevent excretion of horones.

Jim

I had a client who was told by the doctor that his baby's inability to defecate for 4-8 days was "normal." (Check out Pediatricians' web sites, and you'll see that there is widespread concurrence with this belief.) His boy developed autism.

I have a step-relative whose son had a sudden, gargantuan growth spurt very early, and who apparently had calcium issues. He had a cone-head at birth as a result of the vacuum. He developed Asperger's Syndrome. Whether or not this was a result of trauma to the parathyroids or not is unclear, and to the birth-process. The calcium was the point I remembered, in any case.

Both observations made me think that there was something in the gut that caused autism - (I just saw Tamaro's paper for the first time today) - but there are British researchers who've linked antibiotics with autism. My multiple-hypothesis is this:

Tamaro is right: enteric bacterium are damaged and Vitamin K cannot be produced and calcium utilization is interfered with. But my hypothesis is that the combination or cocktail of vaccines causes the body to recognize intrinsic bacteria as the enemy, causing a sort of auto-immune dysfunction, which would result in damage to the ANS (and thus the hypothalamus and other regions of the brain responsible for homeostasis.) It also would be obvious why antibiotics would be harmful - (as there is a whole "culture-of-culture" based upon the replenishment of gut microorganisms.

My guess is that it's a result of misidentification.

One way to test this is to grow a stable colony of bowel bacteria and to administer immune cells that have been treated with vaccines or (b) see if the vaccines kill the bowel cells directly.

Lawrence

The big surprise that may be coming about HHV-6 is that it is a far more serious pathogen than is reflected in its name "Human Herpes Virus." If you check the history of HHV-6 you'll find out that Gallo, its so-called discoverer, had to get his lab people to do some work (that's published) to show that it's not a very destructive porcine virus called "African Swine Fever Virus" which another scientist (who found evidence of ASFV in AIDS patients) suggested Gallo had renamed HBLV which eventually became HHV-6. That might deserve a second look, given how widespread and destructive this supposedly newly discovered (1986) virus is. We know that Gallo stole credit for supposedly discovering HIV from the French. Did he do the same thing with HHV-6?

There is still a lot more work to be done on developing better tests for HHV-6. Better tests may show its role in a number of conditions including AIDS, MS and Chronic Fatigue Syndrome. And of course, autism.

And it is possible that the virus is never really latent or suppressed, but is chronically causing a state of immune activation. We all should be concerned about it.

Gayatri

Kent I have a son with a long standing seizure disorder and we went the homeopathy route in addition to DAN and Yasko. Mito dysfunction too (high alanine, elevated ammonia, higher lactate). He was also pooling unutilized folate and B-12. This was at age 4.5 years. Something in my son made him susceptible to the vaccine damage. I would find a good classical homeopath with good case management skills (I would not recommend sequential homeopathy for a serious seizure disorder as it puts too much stress on a weaker vital force) and treat with miasmatic nosodes. Expect to see infections come up as you treat - and treat those with homeopathic acutes as well. We have seen a lot of infections come up, time and time again, and have treated them and have seen incremental, small gains after.

I would not get caught up in the nitty gritty of a single virus or hormone, rather look at the child as a package deal and attempt to bring the entire organism to a better state of being. It wasn't one particular thing that was causing my son's seizures, it was everything in there all together that was doing it.

Kent Heckenlively

Barbie:

I'm interested in your results. What were the levels of HHV-6? Let me know about continued progress.

All the best,
Kent.

Barbie Hines

Kent:

Based on your first article regarding this issue, my friend and I have run some tests on our children...and low and behold, they are affected by HHV-6...thank you! We are now trying to figure out what course of action we will be taking...and we will let you know the outcome...but I just wanted to thank you and encourage you to keep sharing...you are helping many more than just Jacqueline...I am envious and grateful for your energy...thanks again!

Jim Witte

Kent - (this comment is probably terribly naive, but I'm very new to this whole thing) has your daughter's level of vitamin K2 checked? The seizures are by any means not a "smoking gun" of K2 deficiency, but the seizures might be related to disregulated calcium in the brain. Vitamin K is normally converted into K2 (the form the body can use) by a specific gut bacteria - does your daughter have gut issues? The connection between K and autistic symptoms is detailed in Catherine Tamoro's K2Paper on the yahoo group VitaminK, as is her protocol to restore proper K2 metabolism. Does your daughter have oxalate problems? Catherine has has evidence that inappropriate oxalic acid synthesis in the liver is often caused by hypothyroidism through the action of liver involving the enzyme lactate dehydrogenase. This is a known pathway for O acid synthesis). This may lead to a biomarker other than the normal TSH,T3,T4 for thyroid system function (DO NOT trust your doc's interpretation of these number - the AACE ranges are too lower, and are for NT anyway). I can be reached on the IndianaBiomedicalKids list if you don't have access to my email. A symptom of severe vitamin K2 deficiency is bleeding and possibly easy bruising, as K2 is needed for the formation of several of the clotting factors. The Low Oxalate Diet DOES NOT WORK, for multiple reasons (and restricts the body of some foods that are high in vitamin K, so depletes the body further. Replacing the missing hormone K2 is the solution - restricting what the body cannot process due to this hormone deficiency is not the answer.)

Jeanne

I find out tomorrow about my son's viral panel. I'm on the edge of my seat!

Twyla

Thank you so much for writing about your ongoing exploration of these issues. Congratulations on all that you are doing to find effective treatments for your daughter. We will be so interested in hearing more about how things are going for her. Very best wishes!

Gatogorra

Thank you for that illuminating post. I think you may be onto something regarding that chronology.

We're also looking into a hint about the basis of language production in the linguistic theories of Noam Chomsky-- that the inherant capacity for language is tied to the nervous system, something which is definitely damaged in our kids. I don't know if it will bear any fruit since I don't yet understand the theories of the "Einstein of linguistics", but those parental gut instincts are always following any potentially promising trail, faint or not.

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