My daughter, Megan's recent diagnosis of an autoimmune condition coupled with an abnormal EEG are big, red flags that help illustrate why she is so ill. Finding that out hardly ends my journey for more answers to help improve her health and her life. The disturbing behaviors and symptoms of vocal tics, dilated pupils, agitation, enuresis, and OCD are a barometer of brain dysfunction. Add in estrogen-induced seizures that developed at age seventeen in tandem to her autoimmune diagnosis and that may be another clue. As a result, I have been exploring more of the issues that connect her to those children who have a P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Streptococcal Infections) diagnosis as Megan has had numerous bouts of Strep and other infections that exploded into severe movement and vocal tics over the years. Her original regression into an autism diagnosis slowly happened after vaccinations along with increasing viral and bacterial infections as a toddler, then an acute rash, fever and loss of language after her MMR vaccine. We now seem to be in the land of chronic waxing and waning of symptoms and the most sobering part --- we are not alone.
More parents are finding each other and connecting via their child's medical issues. Autism and P.A.N.D.A.S. may be cousins of a similar origin as there is overlap in symptoms, both behavioral and medical. A good place to learn more about P.A.N.D.A.S. is this informative site . A warrior mother in the P.A.N.D.A.S. trenches, Diana Pohlman, developed it in 2009 as she decided to bring parents, research and researchers together to investigate why their children were becoming acutely affected by a monster that Streptococcus bacteria seemed to awaken. Like so many of us, she saw her son regress into an immune illness that severely affected his mood, behaviors, functioning -- his life. More and more children each year seem to be developing tics, severe anxiety, obsessive compulsions, involuntary movements and psychiatric issues, not randomly, but due to an infection affecting the brain. It is usually Streptococcus, an evil little bacteria that these mothers despise, because it is stealing their children. So Autism parents and P.A.N.D.A.S.parents are beginning to link arms to tackle both cause and cure. As it states on Diana's website above, "Parents Helping Parents," is a key for many families to compare medical issues and treatments.
P.A.N.D.A.S. is a medical diagnosis yet many still do not understand it thus, there is confusion on its causation, how to diagnose it and then appropriate treatments. We in the trenches of Autism are familiar with these issues as we have been dealing with them for too many years. Our toddler or child becomes ill, either through an infection or after vaccination and there is a regression in skills. Odd, perseverative and debilitating behaviors creep in. Life forever changes. Doctors dismiss the cause and labels are given. Precious time is lost then more medical symptoms, more labels. A stinging reality -- lack of proper medical treatments cause worsening behaviors. This continues to happen at an alarming rate.
Some significant research continues to evolve with P.A.N.D.A.S., and the names Cunningham, Swedo and Murphy are becoming instrumental in connecting the hated bacteria to the hosts they have kidnapped. Another interesting development was the apparent acknowledgement from Dr. Tom Insel that P.A.N.D.A.S. was indeed a real, medical illness. For those who do not know him, Dr. Insel is Director of the National Institute of Mental Health (NIMH), the component of the National Institutes of Health "charged with generating the knowledge needed to understand, treat, and prevent mental disorders", per the website, including Autism and now also, P.A.N.D.A.S.
....." Probably the most compelling case for such involvement is children who develop obsessive compulsive disorder (OCD) and/or tic disorders “overnight,” following a strep infection. Despite continuing debate over its parameters, evidence is mounting in support of P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Streptococcal Infections) — or at least a syndrome modeled on it......Interest in PANDAS has also been spurred by an increasingly vocal network of affected families and the clinicians who are treating their often severely-impaired children.
.......Columbia University researchers demonstrated, for the first time, that strep-triggered antibodies alone are necessary and sufficient to trigger a PANDAS-like syndrome in mice.4 In an autoimmune-disease susceptible strain of mice, exposure to strep triggered OCD-like repetitive behaviors and antibodies that attacked specific molecules in the brain. PANDAS-like behaviors also emerged in naïve mice after they received antibodies from such PANDAS mice. These included impaired learning and memory and social interaction. As in humans with PANDAS, these impairments were more common in males than females.....In the second study, a Yale University research team reported that OCD and Tourette Syndrome (tic) symptoms worsened slightly following a strep infection in some affected children.
.....NIMH is preparing to launch a new trial of intravenous immunoglobulin (IVIG) treatment for PANDAS this Fall, with support from a NIH Clinical Center....They are predicting that IVIG treatment will produce striking benefits for OCD and other neuropsychiatric symptoms, and will be most effective for those children who start out with the highest levels of strep-triggered antibodies that go astray and attack parts of the brain.
Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research. The increasing evidence linking strep infection to OCD in children suggests that microbiomics may prove an important research area for understanding and treating mental disorders."
While I appreciate the mention of Autism, I think Dr. Insel needs to know that we are past the "frontier" days of Autism. I have a daughter with a history of regression, who presents with BOTH Autism symptoms and P.A.N.D.A.S. symptoms. It is devastating and she is not alone as there are MANY more who are unlucky enough to have both of these illnesses. Some families are reporting one child with Autism and another with P.A.N.D.A.S. What's in a name? Many have reported regression in their child after vaccination leading to an autism diagnosis, while some say illness alone caused regression. Many P.A.N.D.A.S. parents report acute regression after a Strep infection (other infections as well) but some have reported P.A.N.D.A.S diagnosis after vaccination or severe flare up of symptoms after being exposed to Strep or exposed to those who have been vaccinated with Flumist, for example. Unfortunately, the history of funding for autism research via NIMH stresses GENETIC studies with minimal dollars invested in immune/autoimmune issues. How is that possible?
Both Autism and P.A.N.D.A.S. share a family background of autoimmune diseases including Rheumatic Fever, a Streptococcus induced illness. Neuropsychiatry Online , Pediatrics , NIH , Pediatrics Digest . This study in Clinical Psychiatry News , discusses the evidence that "It’s likely that innate immunity plays a role in PANDAS..... indicative of macrophage activation, a key component of innate immunity." Interestingly, Autism also shows evidence of macrophage activation and a connection to innate immunity.
That same P.A.N.D.A.S. study also brings up a fascinating and pertinent avenue of research - ..."in animal models of familial autoimmunity, interleukin-6 blockade diminishes pathologic behaviors in the treated offspring.." To fully see these connections, here is a nice summary of IL-6 as it relates to bothP.A.N.D.A.S. and Autism Interleukin-6 and chronic inflammation
"Interleukin (IL)-6 is produced at the site of inflammation and plays a key role in the acute phase response as defined by a variety of clinical and biological features such as the production of acute phase proteins. IL-6 in combination with its soluble receptor sIL-6Rα, dictates the transition from acute to chonic inflammation by changing the nature of leucocyte infiltrate (from polymorphonuclear neutrophils to monocyte/macrophages). In addition, IL-6 exerts stimulatory effects on T- and B-cells, thus favoring chronic inflammatory responses. Strategies targeting IL-6 and IL-6 signaling led to effective prevention and treatment of models of rheumatoid arthritis and other chronic inflammatory diseases."
This appears to show that research and treatments aimed at reducing inflammation to be key. Coincidentally, Donald T, Case 1 in the infamous Dr. Leo Kanner paper of 1943 , as reported by Blaxill and Olmsted in their superior, investigative book, The Age of Autism Mercury Medicine and a Manmade Epidemic, was diagnosed with rheumatoid arthritis and following treatments with gold salts, had a remarkable recovery in BOTH his Autism symptoms and the acute rheumatoid arthritis. These are facts that directly link even the first cases of Autism to what we are seeing today -- children who appear to develop anxiety + OCD +"odd" behaviors = mental illness, which then is reversed when the immune system + targeted medical interventions = treating the underlying immune/autoimmune illness.
Some examples of factors that can cause IL-6 release shown in Autism studies:
"HgCl2 stimulates VEGF and IL-6 release from human mast cells. This phenomenon could disrupt the blood-brain-barrier and permit brain inflammation. As a result, the findings of the present study provide a biological mechanism for how low levels of mercury may contribute to ASD pathogenesis."
"....we have carried out the detection of measles genomic RNA in peripheral mononuclear cells (PBMC) in eight patients with Crohn’s disease, three patients with ulcerative colitis, and nine children with autistic enterocolitis....One of eight patients with Crohn disease, one of three patients with ulcerative colitis, and three of nine children with autism, were positive. Controls were all negative. The sequences obtained from the patients with Crohn’s disease shared the characteristics with wild-strain virus. The sequences obtained from the patients with ulcerative colitis and children with autism were consistent with being vaccine strains. The results were concordant with the exposure history of the patients.....In addition, it has been reported that the persistence of measles virus in human cell lines is associated with enhanced production of IL-6"
There is much overlap in Autism and P.A.N.D.A.S., and though discussing these issues that connect them may be controversial to some, it is nonetheless, imperative to investigate how to help these very sick children and to prevent the process in others. As Dr. Insel's website states:
"generating the knowledge needed to understand, treat, and prevent mental disorders"
Teresa Conrick is Contributing Editor to Age of Autism. (Thank you to Adriana Gamondes for the image.)