“If autoantibodies are proven to affect behaviors,
it will change the way we think about and treat mental disorders forever.”
On 5/29/2011, Dr. Madeleine Cunningham presented “PANDAS and Autoimmunity” at the Autism One/Generation Rescue Conference. As of today (5/31), the archived video presentation is still available to watch. We do not know how long it will be archived, so if you would like to do view it, we suggest watching it sooner than later.
We are supplying an outline for those that are unable watch the hour long presentation as we understand parenting a PANDAS child can be time consuming in itself. We suggest you watch it in its entirety if you are able. We are unable to supply pictures of slides in our summary. Summaries, as understood by a PANDAS Network volunteer, are in italics.
“PANDAS and Autoimmunity”
Dr. Madeleine Cunningham
Group A Strep
This included an overall view of strep and how it may appear through such things as pharigitis, impetigo, scarlet fever, Rheumatic Fever, and PANDAS . It was discussed how strep can come from adults, human, and animals. That there are rashes that can be the result of strep and scarlet fever.
Autoimmune Manifestations of Streptococcal Sequalae:Acute Rheumatic Fever
- Carditis
- Sydenham Chorea (CNS manifestation)
Strep Associated Behavior and Movement Disorders
- Sydenham’s Chorea
- PANDAS or PANS (Pediatric Acute Neurologic Syndrome)
- OCD behaviors
- Hyperactivity and emotional lability
- Tic Like Symptoms
PITAND was also mentioned in this section of the presentation and how any infection can cause onset of symptoms.
Despair of Parents (quoted from presentation)
“We watch hopelessly as our dear children lose chunks of their childhood to something so few currently understand.”
A Case of PANDAS
In this section it was discussed how a 14 year old went away to camp where other children were becoming ill. This child appeared to have “cold like” symptoms. Two weeks later, he had an onset of severe obsessions and compulsions.
The criteria for PANDAS was listed and then the clinical manifestation was discussed.
PANDAS- Clinical Manifestation
- Relapsing, remitting symptom course
- Young age at onset
6.5 +/- 3 years for tics and 7.4 +/- 2 years for OCD
- Boys outnumber girl-2.6:1
- Comorbid OCD and tics is common (65%)
- Other co morbid symptom occur frequently
It was stated that even though there is a high chance of tics and OCD both occurring, it is not the case for every child. A child can have one without the other.
Frequency of Comorbid Symptoms in PANDAS
Comorbid Diagnosis
ADHD 40%
ADD 40%
Depression 36%
Dysthymia 12%
Separation Anxiety 20%
Overanxious 28%
Enuresis 20%
Anorexia 17%
It was specifically mentioned that she was surprised by the anorexia numbers.
Symptoms During Exacerbations
Choreiform Movements 95%
Emotional Lability 66%
School Changes 60%
Personality Changes 54%
Bedtime fears 50%
Fidgetness 50%
Separation fears 40%
Sensory Defensiveness 40%
Irritability 40%
Impulsivity/distraction 38%
Symptom Clusters in PANDAS
- Separation Anxiety with Night time fears and enuresis/daytime urinary frequency
- ADHD with emotional lability and emotional changes
- Motoric Symptoms- Tics, motoric hyperactivity, simple compulsive rituals, and handwriting changes
Etiology and Pathogenesis of PANDAS
Charts were provided for this explanation. It was stated that genes and genetic susceptibility plays a role in this along with an abnormal immune response and the types of exposures.
PANDAS Host Susceptibility
- Increased family history of OCD and tics
- Increased family history of Rheumatic fever
It was stated that if this autoimmune reaction is caught and treated with antibiotics, this may lead to a better outcome.
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This following section would be easier to follow when watching the video as many slides are used for the presentation...
Many charts and graphs were used to explain things like the brain antigens, Lysogangliosides and Tubulin. Anti-Lysogangliosides were higher in SC and PANDAS than their controls. Acute PANDAS cases reacted to Lysogangliosides. Anti-Tubulin antibodies help identify acute PANDAS and SC.
It was also stated that in PANDAS kids, excess dopamine is released.
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Activation of Cam Kinase in PANDAS
Activation of Cam Kinase in PANDAS
Overall SC is higher, but some PANDAS kids did score as high as the 200’s.
Graph obtained from previously published “Antibody-mediated neuronal cell signaling in behavior and
movement disorders“.
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At this point, the TelAviv study was discussed and some charts were shown. Again, we cannot use charts used in this presentation in this summary. It was discussed how the mice were immunized against strep and those immunized began to show changes in food manipulation, unable to balance, and induced grooming (ie. water being thrown on them and they continue to groom, unphased by the water). IgG deposits were found in brain sections of the rats immunized with strep. Immunization also led to Cam Kinase increase.
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Dopamine Receptors
They think that D1 affects OCD and D2 affects movements. But they are still investigating this.
Acute PANDAS cases had high anti-dopamine receptors.
Auto-antibody Effects the Brain
They have not proven beyond doubt where the anti-neuronal antibodies are binding to lysoganglioside and dopamine receptors, but they have studies underway for this. Research takes time. They can say the receptors are being triggered/signaled.
How do Antibodies penetrate the Blood Brain Barrier (BBB)?
- Infections release molecules that open the BBB
- Stress induces molecules such as epinephrine which may open the BBB
Disease is a Two step Process
- Immune response
- Opening of the BBB
Acknowledgements were given
Q and A with Audience
In the Q and A section, it was said that her study is no longer enrolling new participants. She has reached 1000 subjects to base research on. She reiterated she is a researcher.
Some points she made in the Q and A
- Can take more than one IVIG
- Longer into the illness, may take longer to heal
- IVIG is known to get inflammation down.
Dr Madeleine Cunningham
My daughter took part in this OU study, she tested in the mid-high range. She is 8 yrs. old and has a diagnosis of autism. I am concerned about the antibiotics, she has severe gut / disbiosis and very sensitive to antibiotics & has resistance also. So, my question is, what other treatments is there?!
There are some kids that cannot tolerate antibiotics well due to gut issues. There are some online articles about this, but not many and I don’t know if one can consider any of them enough of a success to suggest a specific protocol. Some people have gone to DAN! doctors and homeopaths for help if they want to try to go without antibiotics. As with any doctor, you should ask other parents if they have referrals. With PANDAS, you want to clear any infections as that is when healing can finally begin. I, myself, have not gone the homeopathic route so I am in no position to give suggestions or opinions on this.
For others, this is a chance to remind them that antibiotics can help a PANDAS child but one also has to take care of the gut while using them. A probiotic is often give to help maintain the healthy bacteria that naturally exists is your gut. Probiotics will help ward off yeast issues and possible side effects of antibiotics. Probiotics are to be spaced out from antibiotics and some choose to stay clear of probiotics with the strep strain in them even though nothing has been proven that the “good” strep bacteria in probiotics can hurt a PANDAS child. But, they follow the idea “better be safe than sorry” and that’s understandable. Many say it is easier to prevent problems with the gut than it is to clear up problems once they exist.
Here are some articles you may find interesting as they may help with your specific concern
PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with
Streptococcus) in Autism? A Case History
I have some slight issue with some of following article, but the holistic section may benefit you
PANDAS – But Not Bears – May Cause OCD and TICS
Good luck with your journey. I wish your child and your family good health.
and make use of the natural antibiotic GSE: grapefruit seed extract? has anyone tried it?
I hoped that this test should remain available …. I ‘ve found doctors that were positively surprised about the results it provides. since there are no good clinical here in Italy they see, and know how to recognize and acknowledge that the PANDAS exists , for me this test was the “test” that can afford me to do IVIG: here in Italy as you hear the word “autism” , doctors loose science and conscience ..everything is “regression”, nothing is desease…
this test is so “concrete”: was an anchor of hope for me.
we have a page on FB: PANDAS/PITAND INTERNATIONAL
I think everyone, including Dr Cunningham is disappointed that new enrollments have stopped. I cannot speak directly for her, but she really does care about PANDAS families and knows how important this research is. However, this is when we have to step back and remember that it was a research study and I am not aware of any research study that has unending enrollment. 1000 samples were obtained, that is amazing!!!! Hopefully, from those 1000 samples, answers will be found and who knows, perhaps some day it will lead to an established test available everywhere. It is a very lengthy process, but hopefully that will happen someday. Something else to add is that closing new enrollments does not means something was wrong with the study, it means they have a sufficient amount of samples.
yes I know Vickie
I talked to Katie, and she explained everything to me
I am very happy that they have achieved the 1000 samples collected
I really hope that the processing of these data will lead to good results for families
Hi Vickie,
Do you know how to get the PANDAS tests conducted by Dr Cunningham done on my child if it is still available? Fees? Contacts? Insurance coverage? Thanks.
Hello, Vickie. Unfortunately, the test conducted by Dr. Cunningham is currently not available. However, in the future it may be. We will keep everyone updated if and when that should occur.