Physical Therapist Tammy discusses  symptoms, securing the appropriate diagnosis, 24-hour care, informing the community, and research associated with PANDAS>

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.

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.

David and his parents describe the onset of PANDAS.  There are two recordings of David experiencing an onset of PANDAS.

" 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/

*** 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"

https://www.blogtalkradio.com/braininjuryradio/2023/06/19/the-moving-forward-podcast-with-coach-kj-and-dr-valentina-with-guest-steve?mibextid=Zxz2cZ&fbclid=IwAR30tUpMlF1ycpLvkzs1VPA5i-ZMRgW32wXYsnIdWJXv6Vya141mEJJH8Ac

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). 

https://www.octapharma.com/news/patient-stories/2021/reaching-a-community-in-need-helping-patients-with-pans

• IgA
• IgM
• IgG (subclass 1, 2, 3, 4)
• CBC
• ANA
• Ferritin (iron)
• B-12
• Vitamin D

 Success with IVIG

“We paid $32,000 for two high dose IVIG treatments in two months for our oldest son. He was suicidal at 8 years old, so if your 8-year-old is suicidal, you’re going to do what you need to do to get them help,” Heather Ward said.

Mothers like Ward say most people will never know what it’s like inside their home, but for those who do, they’re working to get support.

“It’s just such a private condition. You can feel very alone,” Butler said.

https://www.11alive.com/article/news/did-your-child-change-after-strep-they-might-have-pandas/85-9f83fc58-0b44-439f-9e1f-26d66826f46f

Benjamin’s PANS PANDAS Story – (not autism) unable to receive IVIG

Mom writes

"I had a great relationship with the school. They were trying to figure out his issues and help with a diagnosis. He had many autistic symptoms, but the headteacher kept telling me they did not think he was autistic. He was finally diagnosed with Apraxia, which is a speech issue. They said his tantrums and repetitive behaviors and inability to play with others were since he was frustrated that he could not talk. It was also determined that he had low muscle tone, which contributed to his speech problems. He drooled constantly. The poor kid wore a bib even if he was not eating. No wonder breastfeeding was a disaster for both of us.

It was such a difficult time for my son and our whole family. We had only a few playdates because his behavior was so unpredictable. The temper tantrums were getting worse and worse. He seemed to get more energetic at night, and getting him to bed was difficult. He was my first child and a boy. Was this normal? I was becoming more and more isolated every day."

So let’s review how many professionals have seen my son and missed the diagnosis:

• 2 pediatricians
• school psychologist
• special education teacher
• Head of Special Education
• Summer School Special Education teacher
• 3 speech therapists (preschool, summer preschool, and Norwalk Hospital)
• vision therapist
• preschool teacher in 2’s program
• Birth to Three evaluator
• Birth to Three Speech Therapist
• Occupational Therapist
• Special Education Aides in Preschool
• Counselor in school (when I was sick)
• School Teacher (when I was ill)

https://aspire.care/personal-stories/benjamins-pans-pandas-story/

More stories about PANDAS/ PANS

https://pandasnetwork.org/emmas-story/

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.”

 https://www.bostonglobe.com/2023/06/26/metro/months-misdiagnoses-left-him-pain-child-now-he-wants-tell-others-about-this-little-known-autoimmune-disorder/?fbclid=IwAR1IyTgAPlMK52SikxOSTnhnNufzUlT6iJ2u3B1fzTYL98sqGV5yJf7iWz4_aem_AegdX3WmQOd_xJ2fpn6dNqQsGYbo_NWL6lMx76QET80k01y2eUXvpg4PiPt-DCsqBn8&mibextid=Zxz2cZ 

For more information

 https://neuroimmune.org/susan-swedo-pandas-interview/

For more information