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Why are doctors reluctant to diagnose?
Is there a “PANDAS-test” to do?
How Do I present a Clinical Picture of PANDAS to my doctor?
Are Researchers Trying to Help Solve the PANDAS dilemma?
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).
The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. See Diagnostics Page. Below is the symptom criteria for PANDAS. Additional symptoms, such as severely restricted food intake, may also occur.
PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE.
PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur.
PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmaphoresis.
HISTORY:
1998: Dr. Susan Swedo and associates first described the PANDAS syndrome in “P.A.N.D.A.S.: Clincial Description of the First 50 Cases.“
2005: An excellent study of 202 children by Dr. Loren Mel, et al in 2005 lends credence to the likelihood of PANDAS as a separate etiological entity.
2012: Revised criteria and guidelines for PANDAS was established by the NIMH.
Many doctors assume, if they have heard of PANDAS at all, that it is only the sudden onset of “typical” pediatric Obsessive Compulsive Disorder or Tics. We believe the Case Histories above will help them understand this illness reaches beyond that assumption.
This illness covers several areas of medicine: Psychiatry, Neurology, Immunology, Pediatrics, Infectious Disease and Rheumatology. Until there is a clear diagnostic criteria for PANDAS….this confusion will persist. As parents, we hope our combined stories which are all similar in their severity, will assist in putting the debate to rest.
This is a rare illness. Many doctors have not seen it. Nor have they seen Rheumatic Fever which is a close-cousin to the PANDAS autoimmune syndrome occurring and they don’t appreciate the variability of streptococci and its potential virulence.
More is written about this in the DIAGNOSTIC TESTS portion of this website. Getting a rapid throat swab and 48-hour strep culture is a good first step. A strep ASO and D-nase Titer test is also beneficial in helping to establish the strep connection. But, many times the titers will be only moderately elevated – and at times not elevated or extremely elevated. This is the variable nature of the strep bacteria. We try to briefly address this in the Strep and Other Bacteria The Medical Controversy portion of the website.
It is important to swab all family members to be sure no one is asymptomatic when infected or a possible a strep carrier. Carriers will often not show any strep symptoms, but if tested, will be positive for strep. A carrier will need one or two doses of antibiotics to rid themselves of strep.
Throughout the website we try to explain the clinical picture of PANDAS. Children do not become severely mentally changed overnight unless there is an attack of some sort on their Central Nervous System.
The Cunningham Panel of Tests
A series of 5 tests to help determine the “likelihood of the patient’s condition being auto-immune in nature”, including possible PANDAS, is commercially available by Moleculera Labs. This test is derived from the research done by Dr. M. Cunningham.
Even though a variety of tests can aid in determining the root cause of symptoms and what course of action may be appropriate, PANDAS IS A CLINICAL DIAGNOSIS.
GENETICS:
We have found in our group of 100+ that 90-90% of the families have a history of the following in first or second degree relatives on either mother’s or father’s side (parents/grandparents/aunts or uncles):
- Autoimmune Illness
- Bad Relationship w/Strep Infections (Repeat strep infections, Rheumatic or Scarlet Fever)
- Child has a History of Upper Respiratory Cough, Sinus Issues or Allergies
- Family Mental Health History of Anxiety Issues or Other Related Issues
Please see the Table of FAMILY HISTORY where approximately 20 parents were randomly asked to explain their family medical history. In the interest of time, we did not put all 70+ parents results on this website but in informal conversations these similarities were nearly always found. Bring this table to your doctor if it fits your family’s situation.
AUTOIMMUNE DEFICIENCIES:
Most of the PANDAS children in our group have never had an autoimmune workup –testing immunoglobulin (IGg) levels. Of the 15 families that have done so – 10 of the children had various IGg deficiencies that were extreme to moderate. Some of the families also reported that other family members had extreme immune deficiencies. Research has specifically found that mothers have a 25% chance of having an autoimmune disorder themselves (Clinical Psychiatry News 2011).
DIAGNOSTIC TESTS:
In the DIAGNOSTIC TESTS section there are other suggestions given for tests to be taken that often indicate a child’s “taxed” immune system and scales to help provide a clinical picture of the child’s symptom severity.
Yes. There are many doctors working very hard behind the scenes attempting to get further research projects underway to duplicate and expand on Dr. Swedo’s prior work. In the meantime, our PANDAS Network will try to find you knowledgeable medical professionals who have taken the time research and treat PANDAS patients. Parents who have returned their children to health will also give you their input.
The most promising work to date is done by Kirvan, et al (2003) Mimicry and Auto-antibody mediated neuronal Signaling Cells in Sydenham Chorea (NOTE: See the Discussion Section regarding Dopamine and CaM Kinase Released into the brain.)
And, Kirvan, et al (2006) Antibody-mediated neuronal cell signaling in behavior and movement disorders. (NOTE: See page 3 figure a. – showing elevation of Lysoganglioside, Tubulin and CaM Kinase in PANDAS children at Acute Stages of Exacerbations.)
Briefly, it explains that our children are making… an immune response to group A streptococci that causes brain cells to make too much dopamine. It begins in brain cells exposed to the anti-streptococcal immune response. The brain cells make too much CaM kinase and this leads to too much dopamine. Too much CaM kinase was originally discovered in children that have Sydenham Chorea, a movement disorder usually found in Rheumatic Fever that may disappear in 4 to 9 months. The PANDAS children are also making too much CaM kinase. Anti-brain antibodies induced by streptococci react with lysoganglioside and tubulin and cause the increase in CaMkinase and subsequently dopamine release. Thus these anti-brain antibodies may create movement and mood disorders.
Currently, some Infectious Disease and Immunology doctors have considered these papers as possible evidence of PANDAS, if they are not currently, believers. Some have said they want to see more tested cases. The researchers will be conducting this test on more children when research funding is available. We will be sure to let parents know when that time comes.
Please visit our research section for more information on current studies and articles.
Based on our group of parents that have received treatment – the answer is YES. We have outlined here under the TREATMENT section here what has helped our children.
Most families had to stay on daily prophylactic antibiotics to beat back a resistant strain of strep and/or protect the child while they healed from the exacerbation from getting another strep infection.
Many of us have found our children have a profound autoimmune response to strep microbially – the children did not get a strep infection but they reacted with PANDAS symptom increase while a friend or family member had strep infection.
Many of us have found our children have an immune system that is so heightened that they react to other bacterias or viruses. In these cases, many of us have done IVIG or plasma-exchange as a last resort realizing the antibiotics were not keeping the autoimmune reaction at bay. We have followed a protocol similar to Perlmutter, et al’s (1999), IVIG and Plasma Exhange Study – where 30 children were administered these treatments and had very good outcomes.
Read the PROGNOSIS section to understand how the children are continuing in their health. Look at our 200 PANDAS Case Summaries and Survey Results. There are many happy stories. Do NOT give up hope. You must persist and you will get the help you need.