DOCTORS , TRAINERS, AND CONQUERORS SHARE THEIR PERSONAL STORIES & SUSTAINABLE WELLNE
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Welcome
The Moving FORWARD Podcast hosts engaging interviews with conquerors of external (head impacts an external object) and internal (brain hits the inside of the skull) brain injuries.
Hypoxic brain damage occurs with oxygen levels too low for normal body functioning.
KJ's Personal story https://youtu.be/9J6rWVA_89Y
Video
Addressing Over generalizations and over diagnosing
My don Jay was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified ( PDD-NOS). When we moved to a new location, clinicians were more comfortable withe the term autism so I used autism to accommodate others. Treating autism instead of my son's diagnosis caused a rapid decline in his skills and cognition. According to the Human Disease Database there are over 26,000 anatomical diseases, global diseases and over 18,000 specific diseases.
It's not Autism. It's Autisticlike Traits
Five Ways Someone Can Have Autistic Traits, But Not Actually Be Autistic
.... Abby has only two out of three social traits. It doesn’t matter how strongly and obviously she might have those two traits, it matters how many traits she has. She doesn’t have enough social traits to be autistic. She will not be diagnosed with autism.
Two: Not Enough Restricted, Repetitive Patterns of Behavior
Meet Ben. Ben is 12 years old and in 7th grade. He is extremely anxious. He gets good grades and tests as having above average IQ. He has an excellent memory and can tell you all sorts of obscure facts about his interests.
Population-based studies have found that, in addition to the individuals with ASD, many others exhibit subthreshold autistic or autisticlike traits (ALTs), that is, problems or peculiarities in sociocommunicative behavior, perception of others and self, and adaptation to the environment that do not meet formal criteria for an ASD.
https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1107379#
Psychoneuroimmunology- From Misdiagnosis to Solutions
PANDAS/PANS often OVER DIAGNOSED and misdiagnosed as ADHD or Autism
NIMH
Plasma exchange or immunoglobulin (IVIG) may be a consideration for acutely and severely affected children with PANDAS. Research suggests that both active treatments can improve global functioning, depression, emotional ups and downs, and obsessive-compulsive symptoms.
https://www.nimh.nih.gov/health/publications/pandas
https://www.nimh.nih.gov/health/publications/pandas#:~:text=PANDAS%20is%20considered%20as%20a,the%20child%20may%20have%20PANDAS.
Psychiatrist misdiagnosed schizophrenia and committed Neurologist - Anti-NMDAR & now home
It’s not schizophrenia or bipolar disease. Chronicling Amanda’s success helped her move from noncoherent at a local psychiatric ward to a favorable prognosis from Penn Medicine’s neuroscience department. Anti-NMDAR encephalitis
Chronicling your goals can make a difference in your physician’s testing and your diagnosis. #Self-Awareness #Self-reporting
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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.
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.
My Child is Not Crazy - PANDAS
Dr. Rosario Trifiletti is phenomenal!
Demand for Bloodwork
Separation Anxiety
Symptoms
Anorexia
SSRI or antibioti1cs
120 strands of strep and outdated testing 100,000 pesrsons die from strep annually
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
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
Acute exercise increases the IgA levels in trained subjects but does not affect its levels in untrained subjects.
Selective IgA Deficiency affects 1 in 500 Caucasian persons
Acute moderate exercise, such as 45 min bout of walking, is associated with a transient rise in serum immunoglobulin (IgA, IgG, and IgM) levels
Don't Touch Me - Sensory Challenges
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
The Christy Jagdfeld Story on the Moving Forward Podcast- Stories of Triumph July 21st @10pm EST Podcast link http://tobtr.com/12354298 Forward Life Coaching https://forwardlifecoach.com/ Kellye Jones the author https://www.amazon.com/stores/author/... Christy Jagdfeld https://braininflammation.org/
Coach KJ and Christy Jagdfeld Discuss Going Against All Odds to Find Solutions for Neuroinflammation
Selective IgA Deficiency - IDF Reel Stories. Research Suggests Regular Exercise Improves IgA Levels
Coach KJ and Christy Jagdfeld Discuss Going Against All Odds to Find Solutions for Neuroinflammation
Additional Coach KJ and Christy Youtube discussions
Dysautonomia
POTS
https://forwardlifecoach.com/ Kellye Jones the author https://www.amazon.com/stores/author/B0CYP36R9N Christy Jagdfeld https://braininflammation.org/
PANS and Pandas
For the full article click on this link https://www.facebook.com/beyondmyexpectations/
Coach KJ Discusses PANS/ PANDAS and the Fortitude it Takes to go Beyond Blending in with PT Tammy
Physical Therapist Tammy discusses symptoms, securing the appropriate diagnosis, 24-hour care, informing the community, and research associated with PANDAS>
Coach KJ Discusses How to Inform Others Your Child Has PANS/ PANDAS and Find Resources with LCSW
Coach KJ Discusses How to Inform Others Your Child Has PANS/ PANDAS and Find Resources with LCSW
Licensed Social Worker Patricia discusses the symptoms, securing the appropriate diagnosis, 24-hour care, informing the community, and research associated with raising a child with PANDAS. A mother's love.
Coach KJ Discusses PANS/ PANDAS with Licensed Social Worker and Mom Pat
Coach KJ Discusses How to Inform Others Your Child Has PANS/ PANDAS and Find Resources with LCSW
Licensed Social Worker Patricia discusses the symptoms, securing the appropriate diagnsos, 24 hour care, informing the community and research associated with raising a child with PANDAS. A mother's love.
FAMILY
David and his parents describe the onset of PANDAS. There are two recordings of David experiencing an onset of PANDAS.
From Loss of Appetite, Psychiatric Misdiagnosis, Nudity , OCD, and Profanity, to IVIG and Healin
" I woke up one morning unable to swallow, including water and my own saliva. Each year after that, I began experiencing more symptoms, including food restriction, separation anxiety, a decline in school functioning, OCD, trichotillomania, anorexia, depression, insomnia, anger/rage, hallucinations, profanity, nudity, tics, and seizures in that exact order. After years of seeing specialists and given different psychological diagnoses such as Bipolar Disorder, Dissociative Identity Disorder, and Schizophrenia. My parents knew this wasn’t the case. They saw me every day and knew there was something deeper going on. "
https://aspire.care/personal-stories/finding-pans-pandas-treatment-as-an-adult/
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. ****
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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"
PANDAS /PANS and IVIG
Adde's Story PANDAS and success with IVIG
Avery's Story of PANS and success with IVIG
Avery "experienced extreme OCD symptoms, severe separation anxiety, and sensory sensitivity related to touch, clothing and sound
“The PANS diagnosis was missed by infectious disease and neurologists at the hospital. In fact, several of the neurologists at the hospital didn’t believe in PANS or PANDAS,” recalls Carrie. Avery wasn’t officially diagnosed until April 2019 when she was seen by a paediatrician with knowledge of PANS and the related Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS).
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Complete Recovery
A 9-year-old who enjoyed reading the Harry Potter series, or going on runs and hikes. Vitelli’s life then “completely flipped upside down.”
“I was unable to brush my teeth, tie my shoes, or add two numbers together,” said Vitelli, who lives in Marshfield. “I had symptoms of OCD, anxiety, depression, insomnia, aggression, regressive state of mind, and motor sensory abnormalities.”
I Learned About PANDAS / PANS 20 Years Ago
PANDAS / PANS - Mother’s Love and Her Children’s Three Year Journey to Once Again Attend School
For more information
PANS and PANDAS: An Interview with Dr. Susan Swedo, NIMH
PANDAS / PANS - Mother’s Love and Her Children’s Three Year Journey to Once Again Attend School
PANDAS / PANS - Mother’s Love and Her Children’s Three Year Journey to Once Again Attend School
PANDAS / PANS - Mother’s Love and Her Children’s Three Year Journey to Once Again Attend School
Neuropsychology- Hypogammaglobulinemia - Hypergammaglobulinemia
