By Teresa Conrick
It has been almost five years since I wrote the article, Dear Autism and PANDAS/PANS Researchers - Listen To The Parents. It is probably the most read article that I have ever written for Age of Autism, as it continues to get hits daily. I say this as it is an indication of how the issue of Autism and PANDAS/PANS continues to grow.
The reason I wrote about this subject back then was that my daughter, Megan, diagnosed as autistic since 1996, after having non-stop bacterial and viral illnesses, had been having symptoms, both chronic and acute, that seemed to originate from her dysfunctional immune system. PANDAS/PANS began to come into view more and more as I researched and wrote about it, and more and more parents contacted me. Megan was definitely not the only one who had an autism diagnosis and had perpetual infections that caused the symptoms described as PANDAS and eventually PANS.
Since 2014, I do think our concerns have been received by these brilliant researchers. They have seen our heartache and also the science showing how the autism spectrum for many children began as illness, like earaches, gastrointestinal disorders, sore throats, fevers, rashes, viruses, etc. It is time, in fact way past it, to move ASD from a strictly developmental disorder with roots to some type of phantom, heritable gene(s) as the reason https://www.sfari.org/ , into its appropriate medical domain, with roots into treatable, neuroimmune and neuropsychiatric symptoms. The reasons that must happen are because 1) we have increasing numbers of children suffering and 2) millions of dollars are being wasted on genetic hunting which has zero connections to helping our kids. Enough time has been sacrificed which equates into children being sacrificed.
So let’s look at some of the important connections that we have learned, since I wrote about this in the winter of 2014:
•Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, ,,,Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared.,,,we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time,....” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection.
•Our study suggests that anti-neuronal autoantibodies in ASD may be associated with the presence of PANDAS and investigates microbial polysaccharides as potential inducers of anti-neuronal autoantibodies in children with confirmed ASD or ASD/PANDAS.
•The identification of brain-targeted autoantibodies in children with autism spectrum disorder (ASD) raises the possibility of autoimmune encephalopathy (AIE). Intravenous immunoglobulin (IVIG) is effective for AIE and for some children with ASD….Our small open-label exploratory trial provides evidence supporting a neuroimmune subgroup in patients with ASD.
•Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections syndrome (PANDAS) are conditions that impair brain normal neurologic function, resulting in the sudden onset of tics, obsessive-compulsive disorder, and other behavioral symptoms. Recent studies have emphasized the crosstalk between gut and brain, highlighting how gut composition can influence behavior and brain functions….In conclusion, this study suggests that streptococcal infections alter gut bacterial communities leading to a pro-inflammatory status through the selection of specific bacterial strains associated with gut inflammation and immune response activation. These findings highlight the possibility of studying bacterial biomarkers associated with this disorder and might lead to novel potential therapeutic strategies.
•Here, a small open-label clinical trial evaluated the impact of Microbiota Transfer Therapy (MTT) on gut microbiota composition and GI and ASD symptoms of 18 ASD-diagnosed children….MTT led to significant improvements in both GI- and ASD-related symptoms, and the improvements were sustained at least 8 weeks after treatment. Coincident with these clinical improvements, both microbiota and phage from the donors appear to have engrafted, at least partially, in the recipients. This shifted gut microbiota of children with ASD toward that of neurotypical children is consistent with the hypothesis that gut microbiota may be at least partially responsible for GI and ASD symptoms. While this study was an open-label trial that is subject to placebo effects, these results are promising and provide a crucial step for understanding the connection between the microbiome and ASD.
• we hypothesized that gut microbiota might contribute to Tourette syndrome and assessed the effects of FMT [fecal microbiota transplantation] on a child with TS. To our knowledge, this is the first report of FMT in a patient with TS….Here, we report the case of a patient with TS, tentatively prescribed with tiapride and probiotics at first, which alleviated severity of the patient’s symptoms. However, the patient experienced a relapse of symptoms, and tiapride and probiotics could not achieve remission again. Subsequently, we introduced FMT to the patient, which dramatically ameliorated his tic symptoms.This case shows evidence for significant efficacy and safety when treating TS with FMT, suggesting that rebalancing GI microbiota might offer a promising new biological therapy for TS.
•While growing evidence suggests a key role for the gut microbiota in ASD, the neurologic effects of microorganisms inhabiting the oral cavity have been overlooked. Oral microbial communities can undergo dynamic fluctuations in response to various intrinsic and extrinsic factors and these may in turn affect brain function….increased abundance of Streptococcus and Haemophilus, as well as markedly reduced abundance of Prevotella, Alloprevotella, Selenomonas, Actinomyces, Porphyromonas and Fusobacterium in ASD samples were observed, suggesting a characteristic dysbiotic signature.
Again, since Megan suffered with many bacterial, viral and then fungal infections early in her first years, this is so important to me and I am sure, to many other families who have watched their child regress. Losing your child to an autism diagnosis or PANS when treatments could help, well we must investigate and get that information out to doctors and families, as well as develop treatment protocols as children age.
This is a Letter to the Editor from some excellent researchers in Brazil, and my thanks to them for investigating and then sending it to --- Immunology Letters, Volume 203, November 2018, Pages 52-53
Pediatric acute-onset neuropsychiatric syndrome (PANS) misdiagnosed as autism spectrum disorder
It must be purchased but a brief summary is that this was a child who was 14 months old, who had a viral infection, with also ear infections and other symptoms. About three weeks later, he developed behavioral issues and then tics with other symptoms resembling asd. Within less than two years, he was to be diagnosed with severe autism. I can’t say more other than he was treated with IVIG at age six, and later, subsequent treatments with his symptoms then resolving. Please purchase this as it does include more information and videos, of before and after.
The validation to parents that this is finally being investigated and children could get better, well it is fabulous yet ---- bittersweet. Many of our children regressed long before these connections were being made but we have long suspected it. For some children, it was illness that began the cascade of events into PANS but for others, it may have been a vaccination, according to this data done on vaccine-induced neuropsychiatric disorders, researched at PA State University and Yale .
What I would like to now say is, THANK YOU, to all of the wonderful researchers. You have heard us and are making important connections. Again, I cannot stress enough how this paradigm is giving hope to so many families, but the need for treatments to target the immune system, to eliminate pathogens, and to increase commensal, as well as therapeutic microorganisms, continues to be a need for all of our children.
Megan is 25 and has spent too many years sick and suffering. I am grateful to all of these researchers around the world.
Teresa Conrick is Science Editor for Age of Autism.