Thank you to everyone that attended the first PANDAS Parents Meeting!

PANDAS: A Parents Briefing on Trends, Hope and Next Steps by Amy Joy Smith, NP

"PANDAS: A Parents Briefing on Trends, Hope and Next Steps"
By Amy Joy Smith, NP



Overview:


    Amy and her son's journey:

    It took nearly 4 years to diagnose my son with PANDAS.  By then he was almost 14 and had lost 1/3 of his life. Looking back, I can see tell tale signs from when lance was as young as 6 or 7 – body pain, coordination problems, sensory integration issues, transient obsessions and worries. But it wasn’t until he was 10, after 2 back to back strep throats, that the final breach of the BBB occurred and PANDAS took over my child.  July 7, 2006.  We were in the middle of moving from Atlanta to northern California.  We had sold our house and the movers were there loading up our furniture and the tics started – MOM MY ANKLE IS BUGGING ME…its bugging me it won’t stop moving.  By the time we drove cross country – a trip that was supposed to be fun…see the grand canyon, take our time – we were in a total nightmare.  The tics, anxiety, ocd …he had to lie down in the car because he had to count the poles.  Got to California and didn’t know anyone.

    By the time Lance was diagnosed with PANDAS, we had gone through a string of at least 40 health care providers – pediatricians, psychologists, psychiatrists, neuropsychiatrists, PT, OT, hippotherapist, homeopath, bodyworkers of every conceivable discipline, pediatric allergist – neurologist – rheumatologist - immunogolist, acupuncturist,  Shaman healer, psychic healer, chiropractors, cranial therapists, remote healing, energy healing.  We had tried psych meds, meds for tics, herbs, vitamins, minerals, enzymes, amino acids, aromatherapy, vibrational essences, flower essential oils, nutritional therapy.

    We were told it was psychiatric and that Lance had a sudden explosive onset of aspergers and ocd, We went outside of (the local hospital) for everything.  We were completely broke, my marriage had totally disintegrated, my body was caving in from the stress and sleepless nights spent franctically searching online for any information or clues to help end this nightmare.

    We were lucky.  Two summers ago, I was invited to bring my nutrition practice to Hill Park,  a progressive medical practice where they do integrative medicine at a very high level…functional medicine…personalized. Its like, the medicine you always wanted, without skepticism without borders…without insurance…not primary providers.Many patients with complex diseases do not fit into the standard medical model of care (or) standard protocols. People who the local hospital would  literally say to “we don’t treat that here”. Our office is often the last stop in string of  providers.

    I met Dr. Schweig and asked him to help me with Lance.  Being a provider and a mom – twisted – you feel incredibly responsible to fix it try to help but you don’t have the objectivity – it was killing me that I help so many people with their obscure health problems but couldn't fix my own child.

    After extensive testing, we discovered that Lance did have PANDAS, but also full on celiac sprue; GI infections; methylation problems and several nutritional deficiencies from the celiac. He also had some structural issues.

    Now exactly 2 years later, Lance is an UNFOLDING  success story.



    Hill Park Medical Center:

    Lance’s success - in great part due to the comprehensive care he has received. For him, it wouldn’t have been enough to just know he had PANDAS, because the GI problems and methylation issues would have continued to cause symptoms.  I really believe he is better because we have systematically tackled these many contributions to the neuro-inflammatory process.

    Hill Park Medical Center is integrative medical care. Treating PANDAS is complex and unique to each child. It is important to treat not only the PANDAS but any underlying or pre-disposing imbalance as well, to promote the full health and recovery of your child.


    One needs to address possible areas of INFLAMMATION including:
    • Allergies
    • Possible infections
    • Processing Problems
    • Structural (Cranial)

    One also needs to test the IMMUNE SYSTEM  for:
    • Strep
    • Pathogens
    • Immunodeficiencies 


    Additional testing that may prove beneficial are:
    • GI Health (Comprehensive stool testing – microbes, immune profile, inflammation, celiac and other gut-based allergy responses, enzymes)
    • Nutritional profile (poor absorption LEAKY GUT, poor eating habits due to OCD, stress)
    • Methylation pathways (processing liver)
    • Neurotransmitters / adrenal function. Many of our kids end up on pychotropic medications and they may help some kids, but there is a difference between  inflammatory vs. chemical. Dr. Cunningham's labs  - showed many kids have auto-antibodies to dopamine receptors – meaning they have problems in the processing or the landing/utilization of dopamine – OVER STIMULATING / sympathetic pathways. Finally, changes in mood and mental health are frequently associated with inflammatory cytokines that trigger imbalances in certain neurotransmitters.
    • Co-infection testing
    • General chemistry (ie. electrolytes)


    Trends being seen at Hill Park Medical Center:
    • Nearly all of them have a family member with an auto-immune disease of some kind.
    • Celiac or are somewhere on the celiac scale.  Celiac is an inherited autoimmune disease, implying an already malfunctioning immune system.  People with one autoimmune disease are very likely to have or develop another one due to faulty signaling.
    • Co-infections 
    • Many of the kids we have seen have methylation problems or MTFR mutation
    • Allergies
    • GI dysibiosis and infections , pre and/or post antibiotics – which can give rise to all kinds of food allergies and sensitivities due to poor digestion / leaky gut
    • Hill Park Medical Center is NOT seeing standard Immunodefiiciency Syndromes which unfortuantely makes it more difficult to get insurance coverage (Primary immunodeficiency etc).
    • Nearly all of the children we are seeing are responding to care with the array of treatments we can provide, even if it takes a while to figure it out.   And nearly all have been improving since IVIG.
    • Low dose naltrexone (seems to reset immune response in autoimmune conditons).
    Going forward, Hill Park Medical Center hopes to further help the PANDAS community with studies!



    Parent Advocacy:

    Parents of PANDAS children need to continue to fight for:
    • ICD-9 code established for PANDAS
    • Mandatory insurance reimbursement
    • Legislation advocacy
    • Teen leaders
    • Mandated special ed accomodations


    Lance's Fundraising for Health

    When IVIG was clearly our next step in helping Amy's son, their financial resources were so depleted by that point that in a desperate attempt to help me my friends were in the middle on putting together a community fundraising event so that we could treat my son Lance with IVIG.  I thought I would die of humiliation and even now can hardly believe I survived at all. Now, that has transformed into Lance's Fundraising for Health. That fund that was once started to help Lance is still open and accepts donations to help other families in financial need.


      WE CAN DO THIS
      NEVER GIVE UP

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