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PANS PANDAS Family Stories, Articles, Announcements

Before & During PANS Flare Drawings

5/23/2017

 
Ashlyn’s 5-year-old has been diagnosed with PANS and since been in treatment.  While not in a flare, he drew the fantastic Garfield (top picture).  Then about 5 days after Ashlyn got walking pneumonia, her son, who is not visibly sick at all, drew the second picture, which shows marked regression of skills.  It is a perfect example of how infection and autoimmune function can dramatically impact the brain. Plus it is a great visual example of how fast it can happen.  During this flare he is exhibiting loss of fine motor skills, aggressiveness/mean/short tempered, and peeing the bed and his pants. At the moment he has no obvious OCD, anxiety, etc. Her son is continually being treated for PANS.
 
More from Ashlyn: What You Should Know If You’ve Ever Wondered If Your Child Had PANDAS or PANS (Even If Your Doctor Ruled It Out)
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PANS Awareness Day & a Family Story

10/9/2016

 
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 If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today.  Some posts have just the facts. Some posts are personal.  NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly.  Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website.  Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.

Best,
Gabriella True, NEPANS Board President



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TJ's Story in His Own Words

10/8/2016

 
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TJ created this project below for school and then he also wrote a PANDAS PANS Awareness Day letter to all his teachers requesting they educate themselves on PANS PANDAS so no child had to suffer for as long as he did prior to correct diagnosis and treatment. New England PANS PANDAS Association (NEPANS) is so thankful to TJ and his mom for sharing his story.  His mother also wrote TJ's PANS Story from her perspective.

My Story - PANS Project

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The month of August has always been a month of celebrations, trips, parties, and friends.  August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors.  I always had friends laughing and hanging without any anxiety.  I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.   

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September 2009 - I missed the first week of school because I had strep throat and an ear infection.

October 2009 – I had H1N1 and was quarantined – it was very scary.

November 2009 – I was required to get the H1N1 vaccine to return to school.

December 2009 – Symptoms started to appear.  Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.

February 2010 –  After my first Grand Mal Seizure - The beginning of tests.  EEG, CAT Scans, MRI, Spinal Tap.

Read More

TJ's Story . . . From his Mom's Voice

10/8/2016

 
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During the summer of 2009, after divorcing my husband, my son and I moved into our new home.  Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer.   My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses. 
 
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed.  TJ was attending zoo camp as he had several times previously.  When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned.  I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”.    TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary.  Friday, my good friend agreed to watch TJ while I had some appointments.  He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch. 


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  • 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 >
      • 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