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Dear Autism and PANDAS/PANS Researchers - THANK YOU For Listening, Now What?

Meg sick age 5By 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 ---- Megan 25bittersweet.  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.

 

 

 

 

Comments

Benedetta

Have any of you guys heard or used: Liposomal Glutathione ? Make any difference?

Beleaguered Autism Mom

Thank you for another great article. I paid out of pocket for a Cunningham Panel for my son. Only one of the five measures came back normal - two were borderline and two were elevated (Anti-Dopamine Receptor DI (Titer) and Anti-Tubulin (titer). The doctor who ordered the test said she "wished she had not done it, because it is only supposed to be done if there is a positive Strep test." Now I have to find a doctor who knows what this means and what to do about it. Thanks again.

Benedetta

Here is a recent article on Parkinson.
Years before Parkinson shows up, the victim suffers constipation.
Apparently there is some evidence that the appendix if removed lowers the incidence of Parkinson.
Recent years, new research have shown us that the there really is a reason to have an appendix. It is suppose to be a safe room for good microbes; after some horrible invasion of other microbes. So many questions remain unanswered.

What if the safe room (appendix) is over ran?

Is the appendix connected some how with the immune system. Could this small organ be linked to modulation inflammation?


www.latimes.com/science/sciencenow/la-sci-sn-appendix-parkinsons-disease-20181031-story.html?utm_source=quora&utm_medium=referral&fbclid=IwAR1xf1I7rMjc3ZaFw2rOkrOuG699g6xnZwKXjkTym2m803zgjNnsTcg5n_I

Gayle

Grace-thank you for your compliment! Yes it is a shame that we have to fight the politics and the major institutions like the NIH and CDC before we can fight the disease. If the right research had been done all these years to prove that our children have a neurological-immune disorder that could be treated then our children would have been cured of this illness long ago. Truly tragic for all of us.

Jeannette Bishop

Is this an effect of attempting to vaccinate against common bacteria that may, but most often do not, become invasive? Is the provocation of antibodies via injection with adjuvants against some of the potentially invasive species that commonly reside in the throats actually leading to conditions of chronic immune activation against common species and/or maybe a disruption of a balance that kept these microbes in check, allowing atypical proliferations?

I can't tell if there is any plausible tie-in with this lecture...

https://www.youtube.com/watch?v=cdyXhe3W678

...but it keeps coming to my mind during discussions of PANS/PANDAS...that and the pinpointing of the year 1989 for the start of the autism epidemic by some analyses.

Grace Green

Gayle,
I think you're on the right track there, because it's long been known that M E is a neuro-immune condition, and M E is late-onset "autism". Isn't it a shame that we have to fight the politics before we can get on with fighting the disease.

Patrick

I agree with the previous poster that it helps to go after the secondary infections like streptococci and antifungals (apple cider vinegar is good to add to the list). Their poor immune systems are overworked fighting much like what happened during the Spanish Flu epidemic. Another treatment that I believe is helpful is to boost the natural immune system like using high dose vitamin C. Basically we can be successful by taking the blindfolds off our immune system and let it do it's job. I would add that detoxing heavy metals would further bring down the constant state of inflammation (stress, high cortisol) as well. I love the idea of using what was the only thing that saved those that were slated for death in the Spanish flu epidemic (Streptococci was the actual killer back then after people were busy fighting the flu): http://www.ohioholistichealing.com/our-therapies/category-3/hydrogen-peroxide

Gayle

We have been working with a doctor for many years who says our children do not have autism, but a neurological/immune disorder and they are suffering the effects of this illness. He has been advocating for the use of immune modulators to correct our childrens' dysfunctional immune system, but has never been able to raise enough money to do any clinical trials. We are very frustrated as are other parents and just want these medications to cure our children. His name is Dr. Michael Goldberg and his practice is in Los Angeles California. Teresa you are on the right track if we could only get the chance to try these immune modulators for our children. I think other researchers have discovered the same thing and are also trying to find a way to get trials done on immune modulators. Let's hope someone gets the chance to test them in the near future.

mark brown PA

I have supported Age of Autism all along, I understand how difficult it must be for all of you.
My second job was in Pediatrics. I've said from day 1 too many vacs.
AB MAY help symptoms short term if you have a fungal infection, but AB makes FUNGAL
INFECTIONS WORSE LONG TERM. VAGINAL YEAST INFECTIONS AFTER AB--
SIMPLE SOLUTION--CHECK FOR FUNGUS AT AUTOPSY--CANCER+AD Autoimmune Disease.
Use experts who know FUNGUS! CBD oil is a strong AF anti fungal!
CURCUMIN IS A VERY STRONG AF. GARLIC-GINGER-OREGANO-BAKING SODA the best AF?
I wish you all the best with your journeys.
Mark Brown PA Johns Hopkins Graduate---I think Cancer is often a Fungal Infection.
Crohns+IBD and fungus. CHRONIC SINUSITIS 96% FUNGUS Mayo Clinic 1999

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