NEPANS
  • About Us
    • Mission & History
    • Our Board
    • NEPANS Newsletter
    • Contact Us
  • PANS/PANDAS Info
    • Before/After PANS - Examples
    • PANS/PANDAS Symptom Severity
    • OCD
    • PANS/PANDAS Rating Scales/Tracking Tools
  • Resources
    • PANS Information pdfs
    • Awareness Posters
    • PANS Family Stories
    • Websites/Studies/News >
      • JCAP-Treatment Guidelines & Consensus Paper
      • Research, Studies, Journals
      • Web Articles & Fact Sheets
      • In the News
    • School Resources >
      • Symptoms & Supports
      • Before/After PANS Examples
      • Nurses & Health Care Plans
      • Absences & Homebound
    • Video Library
  • Events
    • Upcoming Events >
      • Outreach Events - Presentation, Tables, Information
    • Past Events >
      • Reaching Recovery Evening
      • NEPANS Integrative Medicine Conference
      • CEC Convention
      • My Kid Is Not Crazy
      • Lecture Series
      • Family Events
      • Family Picnic w PANS Life
      • CT Conf-2014
      • NH Conf-2014
      • Dr's Breakfast-14
      • Parent's Q&A-14
      • RI Conference-2013
      • NEPANS Supported Events
    • Speaker Bios
    • Support Groups
  • Get Involved
    • PANS PANDAS Awareness Day >
      • 2019 Awareness Day
      • 2017 Awareness Day
      • 2016 Awareness Day
      • 2015 Awareness Day
      • 2014 Awareness Day
      • 2013 Awareness Day
    • Spread Awareness
    • Legislative News >
      • CT Legislative News
      • MA Legislative News
      • NH Legislative News
  • NEPANS Blog

PANS PANDAS Family Stories, Articles, Announcements

Handwriting shows the healing

5/31/2016

 
Picture
BEFORE DIAGNOSIS
Onset occurred at age 5, almost 5.5, in September 2010, the Thursday of the second full week of school. He came off the bus that way, moving like electricity was running through him, afraid to sleep alone, with urinary frequency.  Those symptoms were just the start, as more features (fight/flight anxiety, extreme sensory defensiveness, trouble swallowing, fear of vomiting, dilated pupils and light sensitivity) came on in unexpected waves throughout that year.  He did have a “sore throat/cold” and pink eye summer 2010. 
 
We saw many doctors over 18 months; we visited our family doctor, a pediatric urologist, ER doctors, 2 neurologists, psychotherapist, neuropsychologist, allergist, immunologist trying to get to the bottom of all the new symptoms. I was surprised at the ease with which some providers would want to prescribe big-ticket psych drugs without doing things like checking blood sugar or thyroid!  He was eventually worked up for diabetes (negative) and other urinary disorders (also negative).  As waves of more symptoms hit including, sudden sensory defensiveness, irrational and overwhelming fear of red lights, extreme perfectionism, declaring that he wished he were dead; we scurried from one specialist to another searching for help.
 
DIAGNOSIS & TREATMENT
We learned about PANDAS from co-workers familiar with Dr. Louise Kiessling's work in RI and from the April 2012 Parents Magazine article on PANDAS.  One co-worker was listening to our struggles and ran in with the article saying it sounded just like what I had been describing.  I read that article and wondered if the reporter had a spy-cam in my house. Our family doctor looked at the article and agreed that could be a possibility, checking his throat, sinuses, ears, perianal region and blood for strep.  The throat culture was positive despite treatment for strep back in Jan-Feb. In April of 2012 with our family doctor, for his initial treatment for suspected PANDAS, he started a round of antibiotics (Pen V), receiving 3-10 day rounds totally about 4 weeks of antibiotics. We saw dramatic improvements 4 days in.  No antibiotic = full relapse.


Read More

Misdiagnosed with Autism & Apraxia

5/1/2016

 
Picture
BEFORE DIAGNOSIS
It was clear at my son’s 2-year appointment, that he was not meeting his milestones. He was non-verbal, did not parallel-play, did repetitive play and movements, was in his “own world” and had temper tantrums that were more than what the terrible two’s should be. I was referred to the “Birth to Three” services in CT. My son was given speech and occupational therapy while he attended regular preschool. But by his third birthday, it was clear it was not an appropriate placement and he entered the Special Education Pre-School program. His behavior had declined even further. He ignored his baby sister; was not affectionate to anyone. He would scream if I walked him on the “wrong” side of the road, refused to go into certain stores, or used the “wrong” cup.
 
Looking over his medical files from this period of his life, he did have strep throat as a toddler. He was on antibiotics for ten days but clearly that was not enough to heal him. That round of strep throat might have gone but our life was PANDAS had really just started. After that he was sick often with many rounds of strep throat along with ear infections, colds and viruses. I joked with the Pediatrician that they were going to name an exam room after him.
 
Looking back, he definitely had OCD. He was also extremely hyper and impulsive. Worrying about his safety, I built a fence around my backyard because it was hard to keep up with him, especially with a newborn in tow. I call it his college fence because of its cost. At this point he had no formal diagnosis. Although he had many autistic symptoms/behaviors, his special education teacher thought it was not autism. Soon he was diagnosed with Apraxia and the belief was that his tantrums, repetitive behaviors, low muscle tone and inability to play with others were due a severe speech delay. During this time, there was a marked increase in behavioral issues: his tantrums were escalating and getting him into bed was extremely difficult. We basically stopped having play dates because of his behavior; we were becoming more and more isolated every day.


Read More

    Author

    NEPANS Board Members & Special Guests

    Archives

    March 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    December 2016
    November 2016
    October 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016

    Main Sections

    PANS Family Stories
    Submit Your PANS Story
    PANS Family Stories Home Page

    Categories

    All
    ADHD
    Aggression
    Antibiotic
    Antidepressant
    Anxiety
    Autism
    Autoimmune Encephalitis
    Awareness Day 2016
    Awareness Day 2017
    Bartonella
    Bronchitis
    CBT
    Choreaform
    Choreiform
    Cognitive Behavioral Therapy CBT
    College
    Community Outreach
    Concussion
    Depression
    Diet
    Down Syndrome
    Ear Infection
    Emotional Lability
    ENT
    Enuresis
    Family Story
    Fatigue
    Flu
    Food Restriction
    Gardasil
    Goals
    Guest Blog
    Hallucinations
    Handwriting
    Hashimoto's Encephalitis
    Headaches
    Helminths
    Holiday
    Holiday Survival Guide
    Homeopathy
    Hope
    IEP
    Inflammation
    Insurance
    Integrative Medicine
    IVIG
    Joint Pain
    Legislative News
    Lyme & Co Infections
    Mold
    Mycoplasma
    My Kid Is Not Crazy
    Neurofeedback
    Newsletter
    Noonan Syndrome
    OCD
    ODD
    Plasmapheresis
    Psych Meds
    Rage
    Reaching Recovery Stories
    Regression
    Rituximab
    School Refusal
    Sensory Issue
    Sensory Processing
    Separation Anxiety
    Siblings
    Skin Picking
    Sleep Disturbances
    Sound Sensitivity
    Steroid
    Steroids
    Strep
    Suicidal
    Tantrum
    Tics
    Tonsillectomy
    Toolkit
    Urinary Frequency
    UTI
    Vaccine
    Virus

    Note:

    Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!

    RSS Feed

|Copyright © 2017 NE PANS PANDAS Association - All Rights Reserved | NEPANS.org|PO BOX 592, Raynham Center, MA 02768 |
| Disclaimer | Privacy Policy
|
Picture
  • About Us
    • Mission & History
    • Our Board
    • NEPANS Newsletter
    • Contact Us
  • PANS/PANDAS Info
    • Before/After PANS - Examples
    • PANS/PANDAS Symptom Severity
    • OCD
    • PANS/PANDAS Rating Scales/Tracking Tools
  • Resources
    • PANS Information pdfs
    • Awareness Posters
    • PANS Family Stories
    • Websites/Studies/News >
      • JCAP-Treatment Guidelines & Consensus Paper
      • Research, Studies, Journals
      • Web Articles & Fact Sheets
      • In the News
    • School Resources >
      • Symptoms & Supports
      • Before/After PANS Examples
      • Nurses & Health Care Plans
      • Absences & Homebound
    • Video Library
  • Events
    • Upcoming Events >
      • Outreach Events - Presentation, Tables, Information
    • Past Events >
      • Reaching Recovery Evening
      • NEPANS Integrative Medicine Conference
      • CEC Convention
      • My Kid Is Not Crazy
      • Lecture Series
      • Family Events
      • Family Picnic w PANS Life
      • CT Conf-2014
      • NH Conf-2014
      • Dr's Breakfast-14
      • Parent's Q&A-14
      • RI Conference-2013
      • NEPANS Supported Events
    • Speaker Bios
    • Support Groups
  • Get Involved
    • PANS PANDAS Awareness Day >
      • 2019 Awareness Day
      • 2017 Awareness Day
      • 2016 Awareness Day
      • 2015 Awareness Day
      • 2014 Awareness Day
      • 2013 Awareness Day
    • Spread Awareness
    • Legislative News >
      • CT Legislative News
      • MA Legislative News
      • NH Legislative News
  • NEPANS Blog