One day you knew your kid, and the next day it was like she was replaced by a stranger.
She was suddenly afraid to sleep by herself and she started wetting the bed. Your former star student was refusing to go to school, to the point of full on fits of rage if forced. And she started doing some odd rituals to assuage intense newfound fears.
The frustration is real when your doctor doesn’t believe you
You take her to the doctor and they quickly say it’s OCD, ODD, or some other mental health condition. When you insist and press them for answers about how can this be that it came on so quickly, they casually say “it can happen” as they are writing you a prescription for a psych med and sending you on your way.
As a diligent mom you read all of the warnings on the label and think to yourself “there is no way I am giving my kid something that could make her suicidal” – especially because your gut tells you something else is going on.
So you jump online and start doing your research and TA DAA!!!! You find PANDAS and it fits what is going on with your daughter to a T. Finally a solution.
Research is great, but finding a doctor that understands your daughter’s needs is better
You start doing more research – you read forums, join facebook communities, and watch every video and webinar you can find. There is so much information. It feels like you are trying to take a drink from a fire hose. What they heck should you do? You aren’t a doctor, you just want your kid to feel good again.
So where do you start?
Most people want to start with testing. This is a GREAT idea if you are considering using antibiotics – knowing what you are treating makes a difference. Most antibiotics are designed to kill a narrow range of specific bacteria. To maximize the effectiveness of an antibiotic you need to know what bacteria you are fighting. Testing for this will usually require a sample to be grown and the actual bacterial species identified. Broad spectrum antibiotics can be used, but they are less effective, especially in this age of drug resistant buggies.
But what tests do you need to run?
The most common PANS/PANDAS triggers I have seen in my practice are strep, mycoplasma and Lyme disease. So if my patients haven’t already had testing done I will check ASO & Anti DNase B (for strep), IgG and IgM for mycoplasma, and do a lyme panel.
What about specialty tests?
A negative test for Lyme on standard labs doesn’t mean that Lyme isn’t a contributing factor. All tests have varying degrees of sensitivity and specificity. Sensitivity is how good the test is at getting a true positive result and specificity is how good the test is at correctly getting negatives. This means if it is positive it means you most likely have the disease (rather than being a false positive), and if it is negative you most likely don’t have it (rather than being a false negative).
Standard Lyme tests have good sensitivity, but not great specificity – this means we see a lot of false negatives. There are more specific and sensitive testing that can be done from specialized labs. The drawback – they are more expensive, and I suspect that they have a higher number of false positives.
Ultimately, Lyme disease is a clinical diagnosis
– meaning it depends on your doctor and their ability to know what to look for.
Another specialty test that comes up pretty often is the Cunningham Panel. This test checks for five antibodies that are associated with PANS and PANDAS. They are dopamine D1 and D2L receptor antibodies, lysoganglioside antibodies, tubulin antibodies, and CAM kinase II antibodies.
Let me say right off the bat – I don’t run this test. It is expensive (and insurance doesn’t cover it), and it doesn’t change treatment recommendations, no matter what type of medicine you are using.
Ultimately, in my practice, I try not to poke kids if I don’t have to.
I also respect that resources for PANS/PANDAS families get depleted in the search for solutions, so I don’t run labs that won’t change what I do for the kiddo.
The main reason some parents will choose to run this lab is to have proof for skeptical doctors, relatives, or school administrators that there is an autoimmune reason for their child’s behavior.
Only you can decide if this is something you really need to do.
The good news/bad news scenario is that diagnosing and treating PANDAS really comes down to the clinical skills of the doctor.
Bad news: Because PANDAS is not taught in conventional medical schools, and not taught in great depth in naturopathic medical schools, you really have to find a specialist who has gone above and beyond to learn more about this complex condition.
Good news: Once you have the specialist, they can often treat without tons of testing. This is especially true when using homeopathic medicine, which also has the benefit of helping to treat the susceptibility to PANS/PANDAS, not just kill off the bugs and reduce inflammation. (To learn more about what I mean with treating susceptibility in PANS/PANDAS click here).
Want to learn more and connect with other PANDAS parents? Join our FREE Facebook group (There’s a big button below) where you have access to a mini course about homeopathy and PANDAS designed just for you as well as our supportive community.
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Dr. Jennifer Bahr ND
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