 This website is both a resource library and support network for parents and physicians who want information on the nature of this newly identified and often controversial pediatric autoimmune illness. The studies and case histories here have been compiled by parents whose children have overcome this illness or are undergoing medical care to stop its debilitating course. The NIMH website is what doctors refer to for treatment recommendations. We have found the recommendations to be incomplete.
We are not physicians and do not give medical advice. We share with you anecdotal evidence only for a more accurate clinical diagnosis of PANDAS and tentative medical treatments that have worked for our young children. Please send us a message HERE if you have further questions or if you need help finding a physician and we will do our best to help you.
SYNPOSIS:
Does my child have PANDAS? And why can't I get help?
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..
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.
In 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."
Further 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.
Dr. Tamar Chanksy, author of many books dealing with childhood anxiety issues, describes symptom onset succinctly in her website Worry Wise Kids:
- Choreiform movements; involuntary or irregular writhing movements of the legs, arm or face
- Presence of tics and/or hyperactivity
- Irritability, temper tantrums, or mood lability
- Nighttime difficulties
- Severe nightmares and new bedtime rituals or fears
- Separation Anxiety
- Age regression: going back to younger developmental stage
- New handwriting problems, loss of math skills, sensory sensitivities
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.
Why are doctors are reluctant to diagnose?
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.
Also, 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. It is up to you the parent to educate your doctor for the time being.
Is there a "PANDAS-test" to do?
More is written about this in the DIAGNOSTIC TESTS portion of this website. Of course, doing a strep ASO and D-nase Titer test is the first step and getting a throat swab or 48-hour strep test if you haven't already done this. 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 also worthwhile to swab all family members do be sure no one is 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.
How Do I present a Clinical Picture of PANDAS to my doctor?
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.
In the DIAGNOSTIC TESTS section there are other suggestions given for tests to be taken that often indicate a child’s "taxed" immune system.
Are Researchers Trying to Help Solve the PANDAS dilemma?
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. It may take many more months to get the funding and more years to get the results. 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.
Can I cure my child?
Based on our group of 70+ parents and the many that are not listed here that have received treatment – the answer is YES. We have outlined here under the TREATMENT section here what has helped our children.
Briefly, most of us 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.
Please read the PROGNOSIS section to understand how the children are continuing in their health. There are many happy stories. Do NOT give up hope. You must persist and you will get the help you need.
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