DOCTORS , TRAINERS, AND CONQUERORS SHARE PERSONAL STORIES ON SUSTAINABLE WELLNESS
Immune Deficiency Mirroring Psychosis
Autism Research Institute - Advancing Science and Medicine
https://autism.org/editorial-debating-the-role-of-genetics-in-autism/
acetaminophen, SSRI, Immunology, neurology, & misperception
Urgent Call to Action: Moving from Missed Diagnosis and Sedation to True Healing
Medications such as acetaminophen, SSRIs, opioids, paracetamol, benzodiazepines, and seizure drugs can block the body’s natural neuron relay warning system for germs, viruses, and bacteria. When this system is disrupted, the central nervous system shifts into overdrive. Antibodies—specifically immunoglobulin G (IgG)—are blunted and cannot properly “tag” germs for removal. This buildup of infections can lead to outward expressions that look like autism but are not autism: impaired communication, social awkwardness, repetitive coping behaviors, sudden rage, and violent outbursts. Medication may calm or sedate these behaviors temporarily, but it does not remove the root cause—the underlying germ or infection.
These symptoms are better understood in the context of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) . Research from the Autism Research Institute, which has studied autism for more than 50 years, reports that only 20% of people diagnosed with autism have an identifiable genetic marker. This means a large portion of children may instead be experiencing autistic-like traits triggered by immune dysfunction. In fact, approximately 30% of children display either autism or autistic-like traits.
Next Steps for Families and Clinicians:
- Build a baseline of self-awareness. Know your personal norms so you can quickly recognize changes. Clinicians have limited time with each patient; the more precise your observations, the better the outcomes. Remember, once Individualized Education Programs (IEPs) are set, they can be difficult to revise—your clarity now matters. I wrote FORWARD: It is Tangible – The Student Edition to give readers a practical tool for creating a solid baseline self-report. Find it here.
- Pay attention to context. A child’s inability to focus may come from something as simple as heat, noise, or environmental stress. Document these triggers so they aren’t mistaken for developmental or psychiatric decline.
- Seek functional, value-based care. Find physicians who look beyond symptom control and collaborate across specialties to identify the true source of the challenge. Simple question to ask clinicians. Are you using an antinuclear antibody (ANA) test to screen for the presence of autoantibodies or an antigen-specific test to identify antibodies against specific antigens like dsDNA or Ro/La proteins?
- Research top experts. References such as Cast and Connolly’s Top Physicians list can help guide your search. Do not stop until you find a physician who will investigate the core issue and create an effective, personalized treatment plan.
When families establish effective baselines and clear self-reporting, clinicians can develop more precise and restorative treatment approaches. This opens the door to a future where children are not just sedated but genuinely healing.
An effective baseline report challenges confirmation bias, allows other to rethink assumptions, and press forward with treatments that address root causes—not just surface behaviors. It is time to transform outcomes for children and families living with these misunderstood conditions.
Diagnosing
https://www.facebook.com/share/r/14MgEBMz4r3/?mibextid=wwXIfr
Treatment
YouTube Series. Coach KJ's Guests Discuss POTS, PANS, Ehlers Danlos Syndrome (EDS) and More
Stories of Discovery and Triumph. POTS (POSTURAL ORTHOSTATIC TACHYCARDIA), PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome), and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)
YouTube Series. Coach KJ and Dr. Felecia Harris Discuss great Healthy Options Tips.
Moving Forward with Options will host candid discussions with persons who have experienced over diagnosis, missed diagnosis, misdiagnosis with psychoneuroimmunology, and the certified clinicians or trainers who have assisted survivors. Approximately 56% of diagnostic errors are the result of gaps in a patient's self-reporting of social, physical, and cognitive information and 57% are due to breakdowns in ordering diagnostic tests. There are 525,600 minutes in a year still some patients are extended a psychiatric diagnosis in 60 minutes. Our guest's insight on discovery, the line between pain tolerance and pain threshold as well as healthier pathways to success - will provide hope and more options on how to build Momentum for a sustainable recovery!
PANS (PEDIATRIC ACUTE NEUROPSYCHIATRIC SYNDROME) &
For the full article click on this link https://www.facebook.com/beyondmyexpectations/
Coach KJ and Dr. Valentina Discuss successfully treating PANS/ PANDAS with Steve and Pat
Coach KJ and Dr. Valentina Discuss successfully treating PANS/ PANDAS with Steve and Pat
Coach KJ and Dr. Valentina Discuss successfully treating PANS/ PANDAS with Steve and Pat
Coach KJ and Dr. Valentina Discuss successfully treating PANS/ PANDAS with Steve and Pat
Coach KJ and Dr. Valentina Discuss successfully treating PANS/ PANDAS with Steve and Pat
*** This phenomenal interview starts at the
seven (7) minute mark due to technical difficulties. It is a must. Great nuggets of information you will want to share. ****
________________________________________________
Steve and Pat discuss their son's journey from vaccine injured to fully vaccinated. Powerful, life-changing insight for parents, clinicians, EMTs, teachers, law enforcement, communities, and more.
Technical difficulties during the first 7 minutes, but you will want to take on the valuable insight provided afterward.
Our guest Steve grew up in Auburn, NY. Auburn is known for the National Association of Professional Baseball Leagues. So of course he played baseball along with hockey while in school. After school, he served our country in the US Military. This is where he embraced the fact that there wasn't anything he could not do.
One day, Steve met with the school psychologist about his son. The psychologist said his son's reading and writing were in the 5th percentile. This did not make sense. As their family sought answers for why and how this could be happening, they just could not accept the answers. They knew there had to be something more. So his sports mindset kicked in and he started looking to build the right team. Trying to find teammates who understood was exhausting They had to be on the same page and moving in the same direction the doctors were pushing or the alternative path. The bottom line is the military taught him that there was nothing he could not do. His mother never gave up. So, he and his wife were going to get the answers and solutions they needed together.
Hope arose after the first 24 hours after his son was on prednisone and he said his first sentence, "Mamita, do you know where my father is, can you tell him I love him." Steve knew their son had brain inflammation. They just did not know why. After this miracle, everything else became a quest to understand how to move forward.
Join us tonight for Steve's amazing story of tenacity, teamwork, hope, success, and purpose.
Steve's favorite quote is "You can fall asleep in my class if you want to, but the life you save might be your own"
From psychological misdiagnosis to Solutions
NC extends $1.5 million for PANS and PANDAS
An estimated 20,000 persons in NC have PANS/ PANDAS.
Advisory Council included representatives from the
Department of health and Human Services, a nonprofit PANS advocacy group, a professional organization for school psychologists, an organization focused on autism, the State Board of Education, the House of Representatives and the Senate. Also appoints an osteopathic professional, an immunologist, a neurologist, a pediatrician, a child psychiatrist, a nutrition expert, and a parent of a child diagnosed with PANS. The chairs of the Joint Legislative Oversight Committee on Health and Human Services (JLOCHHS), or their designees, served on the Advisory Council.
Solutions and Success - From Psychotic Schizophrenia to a Neurological Lupus Diagnosis
The eventual diagnosis of lupus was made by his rheumatology collaborator, Anca D. Askanase, MD, MPH, director of the Columbia University Lupus Center, and treatments were promptly administered.
Suddenly, Burrell was back.
Healio: How about the connection between neuropsychiatric complications and other rheumatic or autoimmune diseases?
Askanase: It is likely that overlap may extend into Sjögren’s syndrome and antiphospholipid syndrome. However, autoimmune encephalitis and PANDAS areas of immune attack on the brain that rheumatologists may see.
From PANDAS to Plasma Exchange to Employment
As well as the violence, Cameron suffered severe pain in his head, developed a brain injury, suffered from obsessive-compulsive disorder and had short term memory loss.
On several occasions, his family had to restrain him when he pulled kitchen knives from the drawers to stop him harming himself or anyone else.
But in 2015, the hospital started Cameron on a plasma therapy treatment, which saw his symptoms reduced to the point where they almost disappeared.
Natasha said: “We were extremely fortunate to get him this.
“The antibodies attacking his brain live in plasma. It did enough to put him on the road to recovery.”
https://www.mirror.co.uk/news/real-life-stories/my-son-broke-fingers-pulled-24693067
Bouts of hallucinations, nudity and more Misdiagnosed as Bipolar
PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome / Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) After age 10 Amanda experienced decline in school performance, obsessive-compulsive behaviors, nudity, trichotillomania, anorexia, depression, insomnia, anger and rage, hallucinations, inappropriate language, disinhibition, tics, and seizures — in that exact order. For years, she saw countless specialists and was given a series of psychological diagnoses., including Bipolar Disorder, Dissociative Identity Disorder, and Schizophrenia. It wasn’t until much later that I learned these symptoms aligned with PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome / Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) — conditions that are often misdiagnosed as psychiatric illnesses rather than recognized as immune-mediated brain inflammation.
Hospitals from St. Louis to Singapore Orlando. Diarrhea, Asthma, Sinuses at age one. Diagnosis
A powerful story of about a mother's love and a push with doctors to get a second opinion.
She simply states, "A mother knows her child better than a physician - push. "
*** Note a concussion or TBI can contribute to IgA Deficiency.
Understanding Low Immunoglobulin A (IgA) and Misdiagnosis
Selective IgA Deficiency is one of the most common immune system conditions. People with low or absent IgA have a harder time defending their body’s mucosal surfaces—like the sinuses, lungs, and gut—against infections.
Because IgA helps protect these areas, low levels can lead to:
- More frequent sinus, lung, and intestinal infections
- Higher risk of certain parasitic infections
- Increased chance of developing celiac disease (an autoimmune reaction to gluten)
- Symptoms such as fatigue, headaches, and sleep problems
IgA deficiency is also associated with a higher incidence of autoimmune conditions such as lupus, conjunctivitis, rheumatoid arthritis, and inflammatory bowel disease (IBD). Some studies have shown a higher rate of seizures, stiff person syndrome, and vitiligo in persons with IgA deficiency. The systemic inflammation caused by these conditions can contribute to fatigue, loss of appetite, and overall reduced energy levels.
Unfortunately, IgA deficiency is often missed or misdiagnosed because its symptoms overlap with allergies, chronic fatigue, and even anxiety or digestive disorders. Recognizing and testing for low IgA can help guide better care, especially for those with recurring infections or unexplained symptoms.
IgA nephropathy caused Todd's Urine to look like Cranberry Juice
It was more than just kidney stones. Melissa, Todd's mother, found a clinician who took the Hippocratic Oath to heart, ordered the appropriate labs, and secured the correct diagnosis. Today, Todd is active and playing basketball thanks to Dr. Madhura Pradhan.
Comments from Todd's mom.
It was devastating news, but Melissa was relieved to finally have answers. “Dr. Pradhan explained everything,” she says. “My biggest concern was that he is still a kid, and no kid wants to be labeled as ‘different.’ She reassured me that he was going to be able to lead a normal life.”
“They have a special bond,” says Melissa. “Dr. Pradhan is very warm, and she really engages with him. From the minute we walked in the door at CHOP, we’ve had a great experience,”
https://www.chop.edu/stories/iga-nephropathy-todds-story#
Address: 3500 Civic Center Blvd, Philadelphia, PA 19104
*** Note a concussion or TBI can contribute to IgA Deficiency.