By Teresa Conrick
It's official. According to a press release, today April 22nd, Moleculera Lab's website will be live, to start sharing information about testing for Pandas/Pans. I have been writing about PANDAS and PANS for the past few years as they seem related to Autism, and for many of our children, much suffering.
From their website - What is PANDAS and PANS, and now--- CANS?:
"PANDAS is an acronym for "Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci". PANDAS was first reported over a decade ago by Dr. Susan Swedo at the NIH, and affects children abruptly after streptococcal infections. Childhood Acute Neuropsychiatric Symptoms (CANS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are proposed as a new, broader classification that would expand both the etiological infectious agents and the clinical manifestations, to the current description of PANDAS. This is an important development since there are reported cases of patients fulfilling the clinical criteria of PANDAS but laboratory studies are negative for a recent group A streptococcal infection. Published reports have postulated that stress as well as other types of infections can result in neuropsychiatric conditions, which include Borrelia burgdorferi (Lyme disease), Mycoplasma pneumonia, herpes simplex, common cold and varicella viruses."
How will testing help PANDAS/PANS/CANS and many childen also with an AUTISM diagnosis?
"Moleculera Labs provides personalized clinical testing services for individuals suspected of suffering from PANDAS/PANS, which are treatable neurologic conditions that may be associated with motor tics, obsessive compulsive disorders (OCD) and sometimes Autism Spectrum Disorders. This perplexing neurologic condition is believed to be associated with an autoimmune response triggered by commonly occurring infections which result in a patient’s antibodies targeting neurologic receptors in the body.."
This is very good news, and I am very thankful to Dr. Cunningham and her lab. Since Megan has an Autism diagnosis, an autoimmune diagnosis, and has had symptoms of PANDAS/PANS over the years, it is significant to finally be able to connect the many children and young adults who have tics, ocd, issues with eating, food and GI pain, rashes, agitation, aggression, sleep issues, enuresis, anxiety, hallucinations, regression in behaviors, regression in academics, and the gut wrenching effect of all of this on the families. Real medical treatments are essential.
As we continue to be exposed to Autism April, known for it's Light it Up awareness about the simplistic existence of Autism, I think it's time that the world knows that Autism is not some unknown enigma. It is a medical condition, with the immune system being an epicenter for many. Because Dr. Leo Kanner was a psychiatrist, his angle on Autism and those first eleven children, has always had that Freudian spin, but those children each had their own immune issues. You can see the foreshadowing of something causing immune and autoimmune dysfunction back then:
“- 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.
- 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.
- 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.
- 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
- 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.
Infections – viral, bacterial – repetitive behaviors with tics and obsessive, compulsive behaviors --That has been the pattern for so many of these children since these first eleven. Dr. Cunningham's panel of auto-immune detection tests may do what she predicted years back:
“If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”
That time is now. Light it up with truth.
Teresa Conrick is Contributing Editor to Age of Autism.