For years now, parents of children on the autism spectrum have been on the internet and social media sharing their stories. Many, like me, have had horror stories of their child being sick too often and then abrupt and bizarre behaviors would appear. Strep throat was often a trigger for us. ---- The strep infection triggers a misdirected immune response causing inflammation within the basal ganglia, a portion of the brain responsible for speech, involuntary movement (tics) and emotion. This inflammation causes an abrupt onset of neurologic and psychiatric symptoms including OCD, tics, anxiety, emotional lability, urinary frequency and sleep disturbances.
While strep is the initial trigger, PANDAS patients can have recurrent symptom exacerbations (flares) later in the disease when exposed to other (non-strep) infections.
We are not crazy. What we have been living is real and our children are very ill.
Fresh research from my favorite group studying PANS and PANDAS in autism, has their study completed - and an abstract published - Anti-neuronal and anti-microbial immunity link CaMKII and autism spectrum disorder with pediatric acute-onset neuropsychiatric syndrome . The full study will be out in late Fall as I had emailed Dr. Cunningham. She is an awesome researcher and a very compassionate person. She shared that she is involved in similar research, Human anti-dopamine receptor 1 monoclonal autoantibody (mAb) identifies potential mechanisms of neuronal signaling in post-infectious autoimmune-mediated neuropsychiatric disease, and as a result, the full papers are coming out later. Let’s take a look at the highlights of the asd abstract:
♦ Autism spectrum disorders (ASD) may be associated with neuropsychiatric symptoms such as tics, obsessive-compulsive behaviors, and other symptoms characteristic of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS).
♦ Functional anti-neuronal autoantibodies which signal CaMKII and induce excess dopamine release were found in ASD/PANDAS serum.
♦ Interestingly, a CamKII mutation has recently been associated with autistic symptoms in animal models and also in ASD in humans. https://www.ncbi.nlm.nih.gov/pubmed/28130356
♦ Children with ASD/PANDAS had significantly elevated anti-neuronal autoantibodies by ELISA, and strong IgG responses against the group A streptococcal epitope GlcNAc were observed in ASD/PANDAS.
♦ Our study links three common microbial antigens to anti-neuronal antibody responses in ASD/PANDAS and suggests that molecular mimicry between host and pathogen may play a role in development of the autoantibodies and potentially lead to neuropsychiatric symptoms in ASD/PANDAS.
♦ Thus, ASD may be complicated by anti-neuronal antibodies which can develop during infections and may contribute to the co-morbid symptoms of PANDAS in ASD.
What that means is that PANDAS happens when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in our children’s brains. Inflammation occurs at the basal ganglia, which causes the behaviors -- abrupt and sudden onset of movement disorders, neuropsychiatric symptoms and abnormal behaviors. One of the initial episodes for Meg presented with her having severe Parkinson’s-like movements, not eating, frequent urinary accidents, wanting to wear sunglasses in the house and severe anxiety, where she did not want to leave her room. That was years ago but the symptoms continue and exacerbate with illness still. Due to her AUTISM diagnosis, many in the medical field ignored our plight and blamed her symptoms and medical issues as, “that’s just autism,” and offered little help or shrugged their shoulders, not knowing how to help. This line of research is like rays of sunshine finally creeping in after years of darkness for too many families, like mine. I am grateful for it and hope the treatments that come from it can improve Megan’s quality of life.
This is important research. It not only validates what many parents have been seeing in their children for years and years, but helps hasten the changing paradigm of increasing cases of autism being immune-mediated and autoimmune. Meg, is one of these cases. Life has been so hard as the autism field has been wrapped up in the DSM world for far, too long. Treatments for our kids and young adults need to be expanded to the immune and autoimmune world. More and more researchers are shining a light and my thanks to Dr. Cunningham, Dr. Frye, Dr. Swedo et al. Tremendous researchers from around the world are combining their knowledge to help this generation of very sick, young people. Thank you to each and every one of them who wants to improve the lives of our loved ones.