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Pediatric Autoimmune & Neuropsych Disorders — Episode 90

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#90 — Pediatric Autoimmune & Neuropsych Disorders ** November 11, 2015
Guest // Heather Korbmacher, MED, NBCT ** Host // Carla Atherton

neuropsych photo

Imagine that your healthy, happy child contracts a common illness and, seemingly overnight, becomes a different child, with emotional outbursts, physical aggression, strange body movements and vocalizations, and other surprising behaviors.

Parents are perplexed and wringing their hands. They are witnessing dramatic and worrisome transformations in their previously healthy children.

The sequence goes something like this:

  • Infectious agents, environmental exposures, or other triggers are involved.
  • There’s an unintended immune or autoimmune response that results in brain inflammation.
  • The inflammation provokes severe, uncontrollable, and undesirable behaviors. These include OCD/tics, anxiety, sensory processing difficulties, and changes in varied areas, from cognition and personality, to handwriting and eating habits.

Doctors don’t know what to make of it, let alone how to treat your child. But parents, registering that their children are in desperate need of help, are on the front lines of this condition that has become common enough to merit a name: Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). You may be more familiar with the variant, called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus Infections (PANDAS). Many parents have been stunned to learn that their children have sky high ASO and Anti DNAase B titers showing strep infection.

Then what? Parents have questions:

  • Is PANS/PANDAS real? How prevalent is it?
  • What are the signs and symptoms? Do they vary significantly among children?
  • Do children heal? What treatment options are available?
  • What happens if you don’t treat it? Can children outgrow PANS on their own?
  • What advice do experienced parents offer?

heather korbmacherHeather Korbmacher, MED, NBCT is the founder of Courageous Educational Services LLC and mom of two. She has taught for more than 20 years in the K-12 and post-secondary classrooms as a Special Educator, Behavior Specialist, and Adjunct Professor. She recently left the classroom to care for her oldest son who contracted PANS nearly two years ago. This has changed her understanding of behavior and health and she is now dedicated to helping other families access information and services on their journey to wellness, while at the same time, educating the professionals who work with our courageous children and their parents..

Carla-AthertonCarla Atherton, MA, Director of the Lotus Health Project, Writer and Editor, Workshop Instructor, Functional Diagnostic Nutrition practitioner, Transformational Nutrition Coach, Yoga Instructor, Health (R)evolutionary, and Children’s Health Advocate. Carla is a trained Functional Diagnostic Nutrition practitioner and Transformational Nutrition Coach, and is a creative and academic writer, lecturer, workshop instructor, acreage-living, unschooling mom of three. She is passionate about health and wellness, which, to her, involves all aspects of health including the physical, mental, emotional, and spiritual. Carla created the Lotus Health Project, the Children’s and Teen Health (R)evolution, and its biannual online Children’s and Teen Health Summit in order to further her mandate – to let people know, both young and old, they are not alone in their health challenges or management and that anything can be overcome if you have the right mind and information.

 

12 Comments

  • Saro Loucks

    PANDAS is actually Bartonella.

  • Jacqui Potgieter

    My son developed PANS this year. It’s a nightmare! 10 mls of Zithromax Antibiotic (once a day for three days) whacked it out the ball park. He gets this every 10 days after his last dose. We have our son back❤️❤️

    • Heather Korbmacher

      I’m so glad the antibiotics worked for your son! I hope that is all he will need as his body heals! Wishing you and your son well!

  • KP

    My son regressed to severe autism at 19 months. At 3 years, he and I both followed a bartonella treatment protocol. On the first day, he started babbling. Within 10 days he was so much more present. That treatment has brought our son back to us. We were treated based on my clinical symptoms, not on a blood test. Will be forever grateful.

    • Heather Korbmacher

      It can feel like a miracle when we find the right treatment for our child and for ourself! I’m so glad following a bartonella treatment protocol worked for your son! Wishing your family health and happiness for many years!

  • Josette Stone

    I would like more treatment options and to get my son well once and for all! Why do some kids recover and others do not?

    • Heather Korbmacher

      That is the magic question Josette and I wish I had an answer for you because my son would be fully healed then too! I believe that each child comes to this illness differently and it’s a matter of continuing to dig and peal back the layers. It definitely requires being with a qualified doctor who truly understands the many mechanisms of PANS/PANDAS and the neuro science of the brain. We have tried many different protocols, each with varying degrees of success, but nothing has brought our son back to baseline. I would be happy to share with you what we have tried and what our plans are. You can email me directly if you like at heather.korbmacher@gmail.com. I wish your family health!

  • Kari Murphy

    Heather, I was wondering if you could share the name of the naturopath you are working with?

  • Heather Korbmacher

    Dr. Hath Gbedawo with Vital Kids Medicine. vitalkidsmedicine.com

    Also Dr. Ilene Ruhoy, neurologist, will be opening a private practice in Seattle late January. Her website should be live late December. She and Dr. Gbedawo are talking about how they can partner to provide comprehensive care for our kiddos. Wishing your family health!

  • Heather Korbmacher

    For families going through this difficult journey, consider joining a Facebook group.

    https://www.facebook.com/groups/666398706793740/ This one is very active and parents are frequently asking questions and sharing information.

    https://www.facebook.com/groups/425557590971144/ This one is new and growing, but also a safe place to ask questions.

    Also ACN Latitudes has free forums with lots of sharing that may be useful. http://latitudes.org/

    And anyone can email me directly to ask questions or just get moral support!
    heather.korbmacher@gmail.com

  • Roberta Behan

    Heather, what happens to the children that were not diagnosed and are currently adults…..with the issues of mood swings, behavior issues still occurring, where can they get help….no one seems to be talking about that my son is in his 30’s……at age 12 had a rash, fever, pediatrician thought strep the culture came back negative, other doctors then said it was a viral infection…….5 years later after a second flu like situation, he went totally out of control and no doctor could diagnose the cause. We still cannot get him well…….I suspect it was pandas-like at age 12 and again at 17, is that possible? Would give anything to get him help. We live on the East Coast.

    • Heather Korbmacher

      Roberta, I’m so sorry that I didn’t see this sooner! I would like to connect with you a friend on the east coast who can connect with you someone who may be able to help your son. We don’t have research that indicates what happens to children who are not diagnosed and treated as we haven’t identified those children. You raise a great question that many of us ask! Please email me so we can connect on this further. heather.korbmacher@gmail.com

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