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Fund Vanessa's IVIG treatment for PANDAS/Encephalitis

Organized by: Vanessa Vann

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EVENT DATE Aug 01, 2014

THE STORY:

Please help fund me and bring awareness to the fact that adults and children diagnosed with PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, PANS - Pediatric Acute-onset Neuropsychiatric Syndrome and Autoimmune Encephalitis are being denied the proven treatment needed - Intravenous Immunoglobuin (IVIG)

I have Autoimmune Encephalitis and PANS. My blood work and lumbar punctures show I have antibodies in my system are crossing the blood brain barrier. These antibodies cause a whole list of issues including double vision, third and fourth cranial nerve palsy, brain lesions, balance and coordination issues, tingling on my left side, head tilt, memory and concentration problems, olfactory and visual hallucinations, anxiety, manic depressive episodes, disorder eating and OCD. Even with documentation from the medical community at Columbia University, UCSF Neurology and Hill Park Medical Center, Partnership Health Plan of California has refused to provide the next course of treatment - IVIG.

I first developed symptoms in 1995, at eleven years of age but was not diagnosed as having PANS and Autoimmune Encephalitis until May 2013. I have gone through the list of first line attempts of treatment, which include multiple antibiotics and high and low dose steroids with no success. This is sadly often the case for individuals with the disease. As experienced by myself and stated by leading PANDAS/PANS researchers - “If antibiotics are administered quickly –within the first 30 days of initial onset – there is hope that the PANDAS autoimmune process will stop permanently … Unfortunately it takes most families 3 to 4 months at the least to hear a physician utter the word PANDAS or they learn of it themselves through their own research. At this point it seems that the autoimmune process is often well in place.” – PANDAS NETWORK.org Additionally the multiday course of pulse steroids and the two month course of oral steroids for “extreme and rare cases where there is clearly an encephalitic catatonia, disorientation, hallucinations, beyond the typical PANDAS OCD, Tice Anxiety issues” have not relieved my symptoms.

Therefore the prescribing doctors have requested Medi-Cal/Partnership Health Plan of California to approve of the next stage of treatment – Intravenous Immunoglobuin (IVIG), This blood product that is regularly used to treat many autoimmune deficiencies, including autoimmune neutropenia, autoimmune hemolytic anemia. It has also been a first-line therapy for many neurological disorders including demyelinating neuropathies, and with less adverse effects than steroids or plasma exchange.

Since PANDAS/PANS are autoimmune disorders and Autoimmune Encephalitis is both a autoimmune and neurological condition IVIG should be a standard course of treatment when antibiotics and steroids fail as first responders. The American Academy of Allergy and Immunology advocates the use of IVIG for PANDAS and PANDASNetwork.org states, "IVIG has been shown to be helpful with the harmful inflammation caused by autoimmune illnesses but the exact causative actions are not clear yet. Donor antibodies may “retrain” the abnormal antibodies in the patient or the large amounts administered may simply overwhelm the harmful antibodies – thereby removing them from the PANDAS patient. Suffice to say: researchers have found many beneficial mechanisms in IVIG but still debate the specific mechanisms."

Despite all of these findings, support in the medical and research community and appeals from multiple doctors and neurologists, Medi-cal/Partnership Health Plan of California still has refused to provide IVIG as a treatment option. I will have to pay for the treatment myself.

I have been so fortunate to have Amy Smith, NP – PANDAS/PITAND Program Coordinator and the rest of the staff at Hill Park Medical Center in Petaluma CA, helping me on this journey of obtaining IVIG treatment.  The last step lasr step is fundraising to I can have the procedure  and be on my way to becoming a contributing member of society. 

For more information on PANDAS/PANS and Autoimmune Encephalitis please visit
www.pandasnetwork.org/
www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml
aealliance.org/

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