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ENDING THE CONTROVERSY

 

The publication of the Special Edition JCAP and the Consensus Statement puts any question about the validity of PANDAS or PANS to rest. A Consortium of researchers and physicians from respected universities and hospitals, varying specialties, and years of first hand experience, have joined together as a collective medical voice acknowledging these children.


WHY IS THERE A MEDICAL CONTROVERSY?

The bottom line problem is that this is a “New” illness as of 1998 and no one has followed these children from the ONSET. Acknowledgement of these disorders would make us look at disease, such as mental illness, very different…and treat it differently too.

The evidence we gather about the prognosis for our children is based on medical doctors accounts and conversations with patients that have been informally followed within the the past 10 years.

What is currently needed for Medical Researchers is:

  1. A Clear Neuropsychiatric Diagnostic Scale for the PANDAS Onset.
  2. A Clear Immunological Work Up to understand its mechanisms.

Without Clear Diagnostic Understanding of the Onset – doctors do not know what to do. There are 5 fields of medicine involved with PANDAS: Pediatrics, Neuropsychiatry, Rheumatology, Immunology, and Infectious Disease.

The Field of Neuropsychiatry and Immunology are relatively new areas of medicine that the typical Pediatric doctor has little experience with either field NOR do they fully understand how to read the complex Immuno studies.

For those of us who have seen the debilitating ONSET of PANDAS – a sudden and dramatic change in our child in CATASTROPHIC proportion – it is necessary to take action to arrest this onset. Doing nothing – which some of these studies suggest – is simply not an option.

MANY OF US HAVE STOPPED THIS ONSET in its tracks with aggressive antibiotics and for some of us IVIG or Plasma Exchange. It has worked for us. For some it is a cure; and for others a treatment arresting the majority (95%) of all symptoms. It worked in the one and only Perlmutter/Swedo (1998) Study.


ENDING THE CONTROVERSY

In 2014, an online copy of a Consensus Statement on PANS diagnostic guidelines was published by the Journal of Child and Adolescent Psychopharmacology.  These guidelines were agreed upon by “a geographically diverse group of clinicians and researchers from complementary fields of pediatrics”. The paper is entitled Clinical Evaluation of Youth with Pediatric Acute Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference.

Researchers are compiling information to show proof of PANDAS. From showing inflammation on PET scans to showing how the bad antibodies flood the Blood Brain Barrier, the emerging research will not be able to be pushed aside.

Research and awareness of PANDAS/PANS can be the gateway into new discoveries involving the Blood Brain Barrier and disorders involving the brain, including Alzheimer’s, Parkinson’s, and Multiple Sclerosis.

To learn about the future of PANDAS/PANS research, please visit our Fundraise for Research page.


PET SCANS: THE POSSIBLE FUTURE TEST FOR PANDAS

“Basal ganglia inflammation in children with neuropsychiatric symptoms” by Drs. Kumar, Williams, Musik and Chugani shows a significant difference in brain inflammation patterns between PANDAS children and those with Tourette Syndrome (TS). This information was obtained through special PET scanning.

These findings are very important because it reinforces the stance that PANDAS is not just Tourettes or OCD, but it is different and requires different treatment protocols. It also signifies the difference in the etiology, or cause, of the two disorders.

Basal Ganglia Imaging Study by Dr. Harry Chugani
The rogue white blood cells that cause PANDAS affect the basil ganglia of the brain. The basal ganglia are several brain structures located in the center of the brain. They function as a communication route to other parts of the brain and are partly responsible for the movement of our body. Other parts of the basal ganglia are involved in memorization, cognitive and emotional processing, and again initiating movement. There is still much to be learned about how this part of our brain functions. It is theorized that PANDAS causes an inflammation of the basal ganglia. A 1999 study by Ranjit C. Chacko, M.D. showed a connection between OCD and the basal ganglia.

Now, Dr. Harry Chugani at Children’s Hospital of Michigan, is studying the potential use of PET scans as diagnostic tools for PANDAS Dr Chugani states that the basal ganglia are not hard to detect on an MRI scan. In fact, the basil ganglia are large structures. However, the MRI scan is not useful for detection of abnormal microscopic, neurological functioning in the basal ganglia because MRI scans look at anatomy, i.e., tissue density and damage, water displacement, inflammation of tissue (and not the neurological function of this part of the brain). PET scans, or Positron Emission Tomography scans, may be used instead of, or in addition to, magnetic resonance imaging (MRI) scans. This gives anatomic and functional information.

The PET scan works by using PK-11195, a radioactive material, to target the inflammatory cells of the brain.  This chemical is attracted to inflammatory cells and gives information on how the basil ganglia are functioning. Some of the PET scans on PANDAS children are identifying inflammation in the basal ganglia. This may be useful as the long awaited confirmation of P.A.N.D.A.S. that parents have sought.

Dr Chugani said, “By finding PET scan evidence of abnormality in the basal ganglia, we may now have a biomarker for PANDASIndeed, following IVIG in some P.A.N.D.A.S. subjects, the abnormality in basal ganglia has gone away on repeated PET scan. These studies are rather preliminary, on a limited number of subjects, and much more work needs to be done.”

*Please note that Dr. Chugani is not a “PANDAS doctor”.  However this research can really make an impact in the future of diagnosing PANDAS.

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