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:
“If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”
To me, that significant sentence sums up so much of what I see in Meg, read in the research and believe in my heart. There are other researchers also looking into autoimmunity, behavioral symptoms, and illness. Here was a two part series, long but worth the read. I have taken excerpts that relate to autism, Megan and her autoimmine issues: Role of Chronic Bacterial and Viral Infections in Neurodegenerative, Neurobehavioral, Psychiatric, Autoimmune and Fatiguing Illnesses: Part 1
Giles de la Tourette’s syndrome
....A role for streptococcal infections (PANDAS, see below) as causative or mediating agent in TS was established several years ago.3....As mentioned above, streptococcal infections are likely to play a pivotal role in these syndromes......35
Paediatric autoimmune neuropsychiatric disorders associated with Streptococci ('PANDAS')
Streptococcal infections in children are usually benign and self-limited. In a small percentage of children, however, prominent neurologic and/or psychiatric sequelae can occur. Post-streptococcal basal ganglia dysfunction has been reported with various manifestations, all of which fall into a relatively well-defined symptom complex or syndrome called paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS).52
-- Children with newly diagnosed OCD, TS, or tic disorder were more likely than controls to have had a diagnosis of streptococcal infection in the previous year.
-- Previous streptococcal infection was also associated with incident diagnoses of ADHD.
-- Similar results were found in a retrospective, cross-sectional, observational study of 176 children and adolescents with tics, TS, and related problems.55 In a case-control study of children 4 to13 years old patients with OCD, TS, or tic these disorders were more likely than controls to have had prior streptococcal infection in the 3 months before onset date.
-- The risk was higher among children with multiple streptococcal infections within 12 months.
-- Having multiple infections with group A beta-hemolytic Streptococcus within a 12-month period was associated with an increased risk for TS
-- Similar results were found in patients with typical symptoms of Tourette's syndrome.57 The frequency of elevated anti-streptolysin O titers was also significantly higher in patients with attention-deficit hyperactivity disorder (64%) than in a control group (34%).58
The pathogenic mechanism may be secondary to an activation of the immune system, resulting in an autoimmune response.
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.
Dr. Leo Kanner, "Autistic Disturbances of Affective Contact"
- “Eating,” the report said, “has always been a problem with him. He has never shown a normal appetite.
- large and ragged tonsils.
- Following smallpox vaccination at 12 months, he had an attack of diarrhea and fever.
- He vomited a great deal during his first year, and feeding formulas were changed frequently with little success.
- His tonsils were removed when he was 3 years old.
- She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age.
- He vomited all food from birth through the third month.
- the maternal grandfather, a psychologist, was severely obsessive, had numerous tics, was given to “repeated hand washing, protracted thinking..."
- He had been kept in bed often because of colds, bronchitis, chickenpox, streptococcus infection, impetigo, and a vaguely described condition which the mother-the assurances of various pediatricians to the contrary notwithstanding-insisted was “rheumatic fever.”
- obsessed interest-obsessive questions about windows, shades, dark rooms.
- frequent hospitalizations because of the feeding problem.
- He suffered from repeated colds and otitis media, which necessitated bilateral myringotomy.
- The paternal grandmother is “obsessive about religion and washes her hands every few minutes.”
- obsessive trends were reported - There was very marked obsessiveness - Daily routine must be adhered to rigidly; any slightest change of the pattern called forth outbursts of panic. There was endless repetition.
- possible postencephalitic behavior disorder.
- She insists on the repetition of the same routine always. Interruption of the routine is one of the most frequent occasions for her outbursts. Her own activities are simple and repetitious. Once blocks, beads, sticks have been put together in a certain way, they are always regrouped in exactly the same way, -monotonously repetitious - insistence on sameness -demanding not only the sameness of the wording of a request but also the sameness of the sequence of events.
- The sight of a broken crossbar on a garage door his regular daily tour so upset Charles that he kept talking and asking about it for weeks on end.
- Another child, seeing one doll with a hat and another without a hat, could not be placated until the other hat was found and put on the doll’s head.
- A situation, a performance, a sentence is not regarded as complete if it is not made up of exactly the same elements that were present at the time the child was first confronted with it.
- five had relatively large heads."
Infections – viral, bacterial – repetitive behaviors with tics and obsessive, compulsive behaviors.
The pattern did not emerge then that these children, these first canaries of the Public Health experimentation on the immune system, came from families involved in toxic chemicals, like mercury, especially ethyl mercury. The timing of the first vaccination programs with viruses, bacteria and also thimerosal, included as a preservative, was beyond Kanner’s view from Hopkins Psychiatry office. Because Kanner was a doctor of behaviors, he calculated the children and their families as cold, frigid and aloof. He did not flip it around and see that the toxins were forming an illness, toxins that could penetrate the blood brain barrier and let the microbes that science was trying to conquer, right into the brain.
Five out of eleven had large heads. How much longer will this tragedy continue?
Teresa Conrick is Contributing Editor for Age of Autism.