Dr. Hannah Shohat

Strep bacteria has been around for as long as humans have been around (or nearly so) and it is excellent at surviving and hiding from our immune system. It has developed something called molecular mimicry.

What is molecular mimicry? It’s when there are cross reactive antigens on the surface of group A strep that mimic host molecules. Meaning there is something on step cell wall that looks like our own molecules found in our hearts, brain (specifically basal ganglia), joints and kidneys so when our immune system attacks strep, it ends up attacking our own tissue as well. Very smart for strep, not so great for us.

So if you hear the term “cross reactive” antibodies, you will know that these are the antibodies that attack both the strep and our own cells.

So if you hear the term “cross reactive” antibodies, you will know that these are the antibodies that attack both the strep and our own cells.

So the same way that Strep can give us Rhematic fever, Heart and Joint complications, it can also give us Brain complications by these cross reactive antibodies attacking our own brain tissue. Obviously strep is very common and these complications are rare.

Most of the cases reported are in the kids 12 and younger but it has been very rarely reported in adolescents as well. There are no reported first-time cases in adults.

How does one diagnose PANDAS?

These are some of the criteria that need to be present in order for the PANDAS diagnosis to be entertained (not all of them need to be present but a key few):

1- New onset OCD or tics or both

2- Associated with documented strep infection (presence of positive strep culture or history of scarlet fever)

3- New neurologic abnormalities such as new onset ADHD or jerky movements that a child cannot control.

4- Episodic nature: meaning very dramatic ups and downs in the severity of symptoms. And significant worsening in symptoms after every strep infection (even asymptomatic as far as fever, sore throat).

5- New separation anxiety, panic attacks

6- Significant mood changes, emotional lability, uncontrolled screaming, laughing, crying, depression, bipolar like, psychosis +/- suicidal ideations

7- Trouble sleeping

8- Bed wetting that was not there prior

9- Changes in fine motor skills

10- Joint pains

11- Visual and or auditory hallucinations that may warrant some to consider the diagnosis of schizophrenia but given all of the above would fit better with this disorder.

12- Sensory issues that were not there before

Why do some children get strep and have no complications and others have PANDAS?

Its unclear. Most likely it has a lot to do with genetic predisposition as there are studies that found that parents who have autoimmune disease (especially IgA, IgM and IgG deficiencies – deficiencies in the immune system response to infections), sinus issues, severe allergies are more likely to have children who will develop PANDAS. But our environment is extremely important as well. What we eat and how stressed we are plays a huge role in our immune response.

So to diagnose PANDAS we need:

First of all, the presence of positive strep needs to be confirmed on throat culture. Secondly, out of the symptoms listed above a number of them needed to be present. As you can see this leaves a lot of gray area and a lot of room for double guessing and looking for other more common diagnoses.

Unfortunately, time lost in initial diagnosis is significant as there are a number of immune modalities and treatments that need to be started ASAP.

In functional medicine it is common to request the Cunnigham panel biomarkers, which is a panel that shows you specific antibodies to brain tissue. For example, if the test is positive for elevated CaM Kinase then its indicative of involuntary movements, elevated anti Lysoganglioside GM1 is indicative of tics and so on and so forth.

Once the diagnosis is made (unfortunately there are still many docs unaware of this or simply “not believing”) then treatment needs to be started as soon as possible for best results.

The gold standard of treatment is:

1) Antibiotics (sometimes for months at a time)

2) Plasmapheresis (which is a plasma exchange where plasma with “bad” antibodies is removed and clean plasma replaced) – this step is essential as there is clear and irrefutable evidence that it helps as long as it’s done asap.

3) IVIG therapy (The IVIG provides antibodies that your body cannot make on its own. IVIG also provides a wide range of antibodies to help fill in for those your own immune system has not encountered. The antibodies usually last for several weeks and help your body fight off a large variety of infections. Its prepared from serum of donors).

I think its important to note that unfortunately not just strep causes PANDAS (though most cases of PANDAS are indeed due to Strep. Other, less know causes include Lyme, Babesia, Bartonella, Coxsackie.

Some of the treatments that I usually use in addition to the gold-standard ones above include heavy metal detox (where appropriate), gluten and sugar free diet, LDN, Vit D and Coenzyme Q10 and Omega 3. There has been some promising evidence with pure CBD but the results are not conclusive enough to warrant a strong indication just yet.

Obviously as with everything, a consultation with a knowledgeable professional is indicated before you can start any treatment as you should never ever self-treat.