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PANS PANDAS Family Stories, Articles, Announcements

Happy Father's Day

6/19/2016

 
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Improving quality of life - PANS & Autism

6/18/2016

 
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BEFORE PANDAS
My son was born 7 weeks premature. He was received both physical therapy (PT) and occupational therapy (OT) by the time he was four months old and gradually added Speech Therapy (ST) and Applied Behavioral Analysis (ABA). By the time he was 2 he was in therapy (ABA, OT, ST, PT) for 2 to 6 hours a day.  Finally he was diagnosed with Autism and Intellectual Disability and told that traditional therapy would only do so much; we should not try so hard to get him better because it would not really change quality of life. And then doctors told me my other son had speech delays but not autism and would be a slow learner. Picking myself off the couch after a few months of simply collapsing, I got both kids IEPs and more therapy. But the one with Autism was so sickly looking; he had a bloated belly, he had fingernails falling off from fungal infections, he had huge shiners under his eyes, he was so weak he could barely walk and had continual diarrhea. The pediatrician, developmental pediatrician and neurologist all said it was part of the Autism and there was nothing to bother doing. So again I collapsed on the couch half the day and started a business the other half the day, anything to not focus on the grim prospect that my child was a lost cause. One day I finally realized that this was not good enough; I needed to find ways to improve quality of life for this child who was utterly non-responsive to me and no matter what the regular pediatrician said needed to be treated medically, Autism or not.
 
I took him to a well-respected, local DAN doctor (now a MAPS doctor) who ran more tests than I thought possible. Titers for some viruses came back so high that one was done again because he had never seen a titer that high. We slowly treated him, one dietary change at a time, one supplement at a time, 40 dives in the HBOT, nebulized glutathione, one prescription antifungal or anti viral at a time, etc. He went from a child who barely moved, who barely made a noise, who twitched and stimmed all day long curled up in a ball on the floor, who only ate five foods, who barely noticed us to a totally different child. He was now a child who played special needs soccer, who was interested in the world around him, who enjoyed doing things, who ate almost every food except broccoli and green beans, who was clearly happy to see his family. It was a long road with a lot of work. It did not happen over night; it was a slow progress. Yes, he was still severely impacted with autism and intellectual disability but he was happy, engaged and healthier. But, to me, it was clear quality of life had improved.


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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