My daughter, Megan, diagnosed sixteen years ago this month with autism, has now been diagnosed as having an autoimmune disorder, or -- is it -- an autoimmune disease? Disease sounds profound but with all of her very serious symptoms for years, now worsening, it makes sense in my head, but in my heart --- it is devastating. We have tested twice now, using the antinuclear antibodies test , and both times it came out "positive," showing her body was indeed, fighting itself. Although Lupus has been ruled out, we don't know yet what type of antigen is causing the autoimmune response so for now, it is a nameless monster. We do know that estrogen seems to trigger these episodes for Megan.
Because Meg has had numerous symptoms of other disorders and diseases, such as motor and vocal tics, loss of speech, choreiform movements, agitation, rigid OCD (obsessive-compulsive disorder), enuresis, transient psychotic features, aggression, and then a culminating seizure, I have needed to read, research and try to understand the overlap so we could hopefully find both cause and cure. The key, it appears, is a 10.0, richter scale magnitude quote that Dr. Madeleine Cunningham used in her Autism One presentation recently in Chicago. Dr. Cunningham is a brilliant mind who, according to her website, is focused on, "the study of autoimmunity and behavior which is manifest in diseases such as Sydenham's chorea following group A streptococcal infection. Our study identified antibody mediated neuronal cell signaling as the basis for the choreic movement disorder. Other related movement and psychiatric disorders such as obsessive compulsive disorder, Tourette's Syndrome and Tics are under investigation for subsets that may be related to streptococcal infection and/or to autoantibodies which signal in the brain." She has been on the hunt since 1985 for Streptococcus and its many haunting manifestations. Many families of P.A.N.D.A.S. (Pediatric autoimmune neuropsychiatric disorders associated with Streptococci) children have reported a family history of Strep, Sydenham's Chorea, Rheumatic Fever and other autoimmune diseases. Here is that quote from Dr. Cunningham
"Chronic infections appear to be common features of various diseases, including neurodegenerative, psychiatric and neurobehavioral diseases, autoimmune diseases, fatiguing illnesses and other conditions.1-4 Neurodegenerative diseases, chronic degenerative diseases of the central nervous system (CNS) that cause dementia, are mainly diseases of the elderly. In contrast, neurobehavioral diseases are found mainly in younger patients and include autism spectrum disorders (ASD), such as autism, attention deficit disorder, Asperger’s syndrome and other disorders.5 For the most part, the causes of these neurological diseases remain largely unknown.2
Amyotrophic lateral sclerosis
Autism spectrum disorders.....These patients often display repetitive actions and develop troublesome fixations with specific objects, and they are often painfully sensitive to certain sounds, tastes and smells.140, 141Chronic infections appear to be an important element in the development of ASD.6, 16, 143, 144 In ASD patients more than 50 different bacterial, viral and fungal infections have been found,6 some apparently more important than others in causing symptoms....Environmental exposures to chemicals and heavy metals also appear to be important in the development of ASD.140, 141, 147, 148 The relationship between ASD and heavy metals may involve the role of multiple vaccines in ASD pathogenesis.130, 141 ASD patients often show their first signs and symptoms after multiple childhood immunizations, and the sharp increase in Autism rates occurred only after the multiple MMR vaccine came into widespread use.141 In some states in the U.S. children receive as many as 33 vaccines before they can enroll in school.140 Such vaccines can contain mercury and other toxic preservatives, and some may also contain contaminating bacteria, as found in veterinary vaccines.149
When neurological symptoms are present, infections of the CNS must be considered. Brain infections can stimulate glial responses, and the presence of viral and bacterial infections in nerve cells, can stimulate autoimmune responses against nerve cell antigens as well as the infections within them.155
Borrelia-associated psychiatric disorders
Neuropsychiatric Movement Disorders
Giles de la Tourette’s syndrome
Infections are associated with various autoimmune conditions.38-40 Autoimmunity can occur when infections like cell-wall-deficient bacteria are released from cells containing parts of cell membranes that are then seen as part of a bacterial antigen complex, or bacteria can synthesize mimicry antigens (glycolipids, glycoproteins or polysaccharides) that are similar enough in structure (molecular mimicry) to stimulate autoimmune responses against similar host antigens. Alternatively, viral infections can weaken or kill cells and thus release cellular antigens, which can stimulate autoimmune responses, or they can incorporate molecules like gangliosides into their structures.
In addition to molecular mimicry, autoimmunity involves several other complex relationships within the host, including inflammatory cytokines, Toll-like receptor signalling, stress or shock proteins, nitric oxide and other stress-related free radicals, among other changes that together result in autoimmune disease.”
That is a good summary of science and the mechanism to disease but let’s look at autism more closely. It has features of “repetitive actions” and “troublesome fixations.” Watching my daughter in an episode of Strep or Viral induced tics and OCD is heartbreaking. We know this can be P.A.N.D.A.S. and those families who do not have autism but are SOLELY battling Streptococcus, viral infections and/or the autoimmune, downstream effect, often report similar symptoms in their very sick children. One mother I recently chatted with on-line, told me that her son developed P.A.N.D.A.S. at age 9. His episodes of tics and choreiform movements became so severe and lasted longer each time that by age 12, he was diagnosed “autistic.” She shared this, "He has become more like autism the longer he has PANDAS flareups. This last flare brought trouble "finding words" as he put it.”
The troubling truth emerges – more mothers report P.A.N.D.A.S. soon after vaccination – “early P.A.N.D.A.S. symptoms in Jan. 2010, 28 days after a meningitis vaccine.” – “My son was diagnosed with Strep 14 days after his 2nd H1N1 shot. P.A.N.D.A.S. behaviors started about a month after that.” –Developed his first P.A.N.D.A.S. symptoms within the first week of getting chicken pox vaccine at the age of 10.” There is something eerie about the similarities that P.A.N.D.A.S. and Autism share. Here is a collection of behaviors and medical data described in 1943, of the very first children ever diagnosed with autism.
Infections – viral, bacterial – repetitive behaviors with tics and obsessive, compulsive behaviors.
Five out of eleven had large heads. How much longer will this tragedy continue?