Last week we connected the dots between group A strep and PANDAS. If you missed it, you can read more here.
Strep is a difficult and dangerous bacteria. It disguises itself as body tissues like the heart, skin, joints, and brain. So it takes the immune system a while to identify it as a foreign substance that needs to be eradicated.
And once the immune system does see through strep’s disguise, it can sometimes get confused and begin to attack the body tissues that strep mimicked. That’s how autoimmune conditions like PANDAS develop.
In the case of PANDAS, the body attacks a part of the brain called the basal ganglia — a cluster of neurons at the base of the brain associated with movement disorders.
PANS and PANDAS are not simple to diagnose. With many conditions and diseases, a doctor can look at labs to give a definitive diagnosis. But there is no lab test that will accurately diagnose PANS/PANDAS.
The diagnosis of PANS and PANDAS is a “clinical” diagnosis. This means that your healthcare provider will base their diagnosis on your child’s medical history and symptoms. For a PANDAS diagnosis, you need to find a connection to group A strep.
There are several different options when it comes to diagnosing strep.
In the case of suspected strep throat, doctors will perform a throat swab. If you catch an active infection and the test is performed properly, a throat swab can give you an accurate strep diagnosis.
But, it’s entirely possible to have a strep infection and a negative throat culture. Throat cultures can give false negative results if the swab isn’t performed properly or is mishandled.
Additionally, strep infections can show up in areas other than just the throat. If your child has a strep infection in the nasal cavity or anus, a throat swab won’t help detect the bacteria.
By the time your doctor suspects that your child may have PANDAS, the strep infection may have cleared up. So testing for the group A strep bacteria won’t tell you whether or not your child has had strep. But there are other diagnostic options that don’t rely on active strep bacteria.
After your immune system has fought off an infection, you will retain antibodies specific to that infection. So your doctor may use a titer test that checks for these antibodies to determine if your child has had a strep infection.
SERUM ASO TITER (ANTISTREPTOLYSIN O) TEST
The ASO titer blood test measures the antibodies your body produces in response to streptolysin O, a toxin produced by the bacteria that cause group A strep. These antibodies are produced 1 week to 1 month after the onset of the group A strep infection. They peak in the blood between 3 and 8 weeks after the active infection. But they can stay in the blood for several months.
SERUM ASDB TITER (ANTI-STREPTOCOCCAL DNAASE B)
Anti-DNase B is another blood test that looks for group A strep antibodies. These antibodies are also elevated following a group A strep infection. They peak 4 – 6 weeks after infection and are detectable longer than the ASO antibodies. When used in combination with the ASO titer test, over 90% of past streptococcal infections can be correctly diagnosed.
TESTING FOR CHRONIC INFECTIONS AND AUTOIMMUNITY
Diagnosing group A strep is just one piece in the PANDAS diagnosis puzzle. You also have to test for chronic infections and autoimmunity. There are a few different tests your doctor may use for this.
ANA TEST (ANTINUCLEAR ANTIBODY TEST)
Antinuclear antibodies attach to the proteins inside the nucleus of the cell. Having some ANA is normal. But elevated levels can indicate the presence of an active autoimmune disease like PANS or PANDAS.
Your child’s doctor may run this test to help provide information that can lead to a diagnosis. Elevated levels of ANA can be present in other conditions, so this test won’t give you a definitive PANS or PANDAS diagnosis, but it can provide a piece to the puzzle.
THE CUNNINGHAM PANEL
The Cunningham Panel was developed by Dr. Madeleine Cunningham to diagnose and treat infection-induced neuropsychiatric disorders like PANS/PANDAS. This isn’t a single test, but a series of complex blood tests.
The Cunningham Panel consists of 4 binding and blocking tests, along with a cell stimulation test.
The binding and blocking tests measure specific antibodies that either attach to or block certain brain neuronal targets. These antibodies attack the dopamine sensors in the basal ganglia of the brain. And when they are present, it can indicate that an autoimmune condition is likely responsible for the neurologic and/or psychiatric symptoms.
The cell stimulation test checks to see if the patient has autoantibodies present that bind to and stimulate the CaMKII enzyme. This enzyme is involved with the neurotransmitters dopamine, epinephrine, and norepinephrine.
If the patient has antibodies that react with this enzyme, they may have behavioral, neurologic, and psychiatric symptoms. The stimulation of this enzyme is also associated with other neuropsychiatric symptoms including involuntary movements, along with cognitive and emotional issues.
Your child’s physician may also use an IgG test to measure total immunoglobulin levels or a CD4 test to look for an overactive immune response.
It’s not uncommon for PANDAS children to have additional infections, including Lyme and mycoplasma, as well as viral and fungal infections. So oftentimes, it’s good to test for these as well.
THE PROBLEMS WITH CONVENTIONAL LAB TESTS
But after all this, your child’s PANS/PANDAS diagnosis will still be reliant on looking at symptoms. Conventional lab tests won’t tell the whole story.
As I mentioned earlier, sometimes it’s difficult to diagnose strep. Either the active infection is gone, the test is performed improperly, or they fail to test the right part of the body.
Testing the titers is a good option, but these tests aren’t always conclusive either. Titers are often only moderately elevated, or sometimes not elevated at all in PANS/PANDAS patients.
And according to one study, only 54% of children with strep showed elevated ASO and only 45% showed an increase in anti-DNase B.
IN ORDER TO REACH A PANDAS DIAGNOSIS, YOUR CHILD’S DOCTOR WILL LOOK AT THESE CRITERIA:
- Obsessions, compulsions, and/or tics
- Symptoms that started suddenly, or that come and go (relapsing/remitting)
- The patient’s age — average age of onset is 6-7
- Previous strep infection
- Additional neuropsychiatric symptoms like anxiety, hyperactivity, changes in mood, or developmental regression
If you think your child has PANS/PANDAS, you may have to advocate for your child by specifically requesting all the testing. Unfortunately PANS/PANDAS are often missed because doctors are not looking for a medical cause for psychiatric symptoms.
PANS/PANDAS is hard on the child and the parents. If you’re looking for support from others who understand, I invite you to join my private Facebook group for families affected by PANS/PANDAS.
You can also get support delivered directly to your inbox. To sign-up for my weekly newsletter, click here.
And whether or not you have a diagnosis, it is possible to improve your child’s symptoms. In my practice I use a variety of gentle, holistic, scientifically-backed techniques that I’ve seen help countless children. If you’d like to talk, click the button below to book your consultation.
Photography By Jocelyn Lee