This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Tuesday, April 6, 2010

The Viral Piece

A big piece of our puzzle presented itself in 2008 when I became very sick with what was first thought to be a heart problem, but later turned out to be a larger chronic health condition.  My doctor (actually Roo's DAN! doctor) suspected brain inflammation because of my range and complexity of symptoms, and wanted to look for viruses as one possible cause.  Testing showed chronic active HHV-6, a virus that can cause smoldering inflammation and damage in the central nervous system, and which is found (in it's active form) in most people with Chronic Fatigue Immune Deficiency Syndrome as well as people with MS.  I was put on Valtrex and showed immediate (although limited) benefit.

In a moment of cosmic synchronicity, just days before I got the test results I had read an article that HHV-6 had been found to weave itself into a person's genetic material and could be passed from mother to child in this way.  The results of congenital HHV-6 infection weren't known for sure, but the characteristic traits that had been observed seemed to be a good fit for Roo.  I convinced the Dr to put Roo on a trial round of Valtrex as well to see if he responded.  He potty trained in less than 24 hours, something we had been working on for several years without much progress.  His language development also jumped forward to such a degree that his speech path was speechless!

Our current working hypothesis is that Roo had a weakened immune system (possibly from genetic susceptibilities or other factors), such that when he got Roseola- a normally benign childhood illness- it led to neurological inflammation and ultimately to many of his ASD symptoms.  The damage to his gut could have been the result of other opportunistic infections, which were allowed to flourish because of the immune-suppression that this virus can cause, or it seems equally possible that whatever immune weaknesses led to the chronic viral activation also led to the opportunistic gut infections, including bacteria and yeast, that seem to be at the root of his digestive difficulties.  Whatever direction the causality goes, these opportunistic "bugs" have been churning out a steady stream of neurotoxic metabolites that have been disrupting brain function as well as other biological functions (probably including mitochondrial function).  The mitochondria provide the energy that powers the immune system, so once again we have a potential feedback loop that is complicating matters and making it even more challenging to establish the chain of causality.

It turns out that inflammation is a very common health problem in mothers of children on the autism spectrum.  It is common for these mothers to have such inflammatory conditions as depression (seen before the diagnosis of autism in her child), CFIDS (Chronic Fatigue Immune Deficiency Syndrome), fibromyalgia, allergies, and other auto-immune disorders.  Understanding the role and mechanisms of inflammation in the body, as well as how it can go awry and why, seems to be one of the central questions of this epidemic.

Here are a few links and resources regarding HHV-6 and viruses in general:

This is the article that I had just read when I got my test results, the one discussing research that found that HHV-6 was integrating itself into the chromosomes of humans and being passed on congenitally.   This is an abstract for another study that also found that HHV-6 was being passed along congenitally in 1% of births.  (I just discovered that both of those links are no longer good and will try to find the information elsewhere.  In the meantime, Science Daily just ran a story with similar but more updated information here.)

This article in The New York Times is reporting on a study (by Komaroff, Cheney, Peterson, et. al) that found brain inflammation in CFIDS patients as well as demyelination.  This study also found chronic active HHV-6 in most of the patients studied (but didn't find evidence of a causal link). This is significant because it is the first study linking CFIDS to physiological abnormalities.

It turns out that, in anther cosmic coincidence, CFIDS is almost as much of a political minefield as autism is.  The site Osler's Web has a great deal of information about both the disease of CFIDS itself as well as documenting the bizarre web of political intrigue surrounding it.  This piece details the obsession that Bill Reeves, former lead investigator into CFS for the CDC, had with writing off CFIDS as a psychosomatic illness rather than a biologically based one.  He terminated research that was promising and has played a major role in keeping patients from getting the attention and medical care that they need.

Bill Reeves left the CDC this year after the fallout from the discovery of XMRV, a human retrovirus, that seems to be highly linked to CFIDS.  This will hopefully begin a new willingness in the CDC to acknowledge the biological reality of this disease and finally get some good research going in this direction.  In the meantime a private research institute, The Whittemore Peterson Institute for Neuro Immune Disease, has been conducting valuable research into the role of viruses, namely HHV-6 and XMRV, in acquired immune and neurological dysfunction.

This article explores the connection between neurological inflammation and immune function in autism, although as with most things that have the word "autism" in the title, it applies to a much broader range of issues.