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PANS PANDAS Family Stories, Articles, Announcements

Happy Thanksgiving

11/24/2016

 
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Giving Thanks

11/22/2016

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We have a lot to be grateful for. The PANS/PANDAS journey is not an easy one; it can be filled with exhaustion, heartbreak, worry, frustration, roadblocks and more. But during this time of Thanksgiving we encourage everyone to reflect on their life and see the good things, the rays of hope, and the many things we can be thankful for.  NEPANS works to spread PANS/PANDAS Awareness everyday but we could not do it without our large community of children, parents, doctors, teachers, family, researchers, therapists, volunteers, friends and donors. We are thankful for each and every one of you.
 
with Thanks and Gratitude,
The New England PANS PANDAS Association Board

  • Our children who are the bravest, strongest, toughest people we know. They are our inspiration.
  • Doctors and researchers who have blazed the trail to better awareness, understanding and treatments for our kids.
  • Doctors who are just starting to learn about PANS/PANDAS and not dismissing the diagnosis.
  • Lecturers who donate their time to help educate our community.
  • Educators and School Administrators who are dedicated to creating a school environment that supports our children so they can continue to learn and feel safe.
  • Therapists that support the multitude of PANS/PANDAS symptoms children experience.
  • School Nurses who continually want to learn more about PANS PANDAS.
  • The community of PANS/PANDAS families who support each other day in and day out becoming some of the best friends one could ever imagine.
  • Siblings of PANS/PANDAS kids who have a unique set of struggles but are a shining example of compassion and understanding.
  • Family and friends who support families caring for children with PANS PANDAS.
  • Donors who support the efforts of NEPANS. Without you we could not fulfill our mission of creating awareness and support.
  • Our volunteers who help make all the NEPANS programs run smoothly.
  • To all of those who help spread PANS/PANDAS awareness and understanding. Each of you make the next day more bright and hopeful than the last.

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PANS/PANDAS Holiday Survival Guide
Holidays are fun. But they are stressful even without throwing an autoimmune disease into the mix. Take a deep breath. These are your holidays, no one else's. The holidays get packed with activities pretty quickly. The important thing is to be around family, spending time, trying to catch a breath and being thankful for the little things. Most importantly, find joy in the moment. Here are a few tips from NEPANS to help you!



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Holiday Survival Guide for PANS/PANDAS Families

11/18/2016

 
NEPANS wishes everyone and their families a wonderful, healthy, grateful Holiday Season. Below is a Holiday Survival Guide for PANS/PANDAS Families with a few highlights from our board members.
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Holidays are fun. But holidays are stressful even without throwing an autoimmune disease into the mix. Take a deep breath. These are your holidays, no one else’s. Holidays are not a litmus test determining how happy and successful your family is. The holidays get packed with activities pretty quickly. You can say no to events, you don’t have to drive into town to see the tall tree, your food is not going to grace the covers of a magazine, you are not going into the hall of fame if your kids act like angels, and that two page yearly recap you wanted to write up, well skip it.  The important thing is to be around family, spending time, trying to catch a breath and being thankful. That is when the little things matter; be thankful for the little things.

In a Nutshell
  • It’s Your Holiday. Be completely traditional. OR. Take some traditions but leave the rest. OR. Make completely new traditions. Just be realistic about what your family and your child with PANS is capable of and what will make everyone happy.
  • Make a Plan. Make it reasonable, don’t overbook but plan something to make it special. And make a back up plan just in case. Try to plan time to relax.
  • Prep for Change in Routine. The plan helps.
  • Laugh. Don’t forget. It is very important.
  • Be Thankful.
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The Family Gathering
We know our incredible PANS/PANDAS kids are dealing with an extremely tough disease. Some are great about rallying behind your family, understand the complexity of PANS/PANDAS and figure out ways to help out. But then there are others who just simply don’t and are flat out not supportive. So if we are gathering with family and friends, sometimes in order to make things work, we need to plan and put some supports in place to make them feel more comfortable, which in turn can make our children feel more comfortable. We also need to make plans that will support our children so they can enjoy the holidays to the best of their ability.


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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 >
      • 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