Getting a diagnosis of PANS or PANDAS isn’t easy. There are MANY reasons for this, the biggest one being that not enough people are familiar with the condition. Sadly, there are also some doctors and entire healthcare systems that have a stance that PANS and PANDAS are not real conditions. These doctors will actively refuse to give you the diagnosis, even when it clearly meets the criteria.
Working with a medical provider that specializes in PANS/PANDAS is the easiest way to get an accurate diagnosis. But because PANS and PANDAS are emerging conditions, specialists can be hard to find and often have long waitlists. You might need to look far outside of your hometown, or even your state, to find someone who can help you. So while working with a specialist is the easiest, it might not be the fastest.
Keep reading to learn more about how to get a diagnosis, diagnostic criteria, what you might need a diagnosis for, and what you can do in the meantime.
Get Your Community
One of the most important things I have learned from working with the PANS/PANDAS community for over a decade is the importance of the community itself. Many parents only learned about the condition because they happened to share their struggles with the right person who recognized what they were experiencing. There are many online groups for parents to help each other learn about and navigate this devastating condition.
If you aren’t already a member, we encourage you to join our Facebook group, Homeopathy for PANS & PANDAS. Here you will get condensed information, designed to help families who are struggling get the information they need to make the next right step for their families. It is a homeopathy-focused group, but we cover the global picture for PANS/PANDAS in our guide videos. You also get support from a large community, get to borrow their wins, and lean on them when you need support.
Once you have joined our group, search for your local PANS/PANDAS group. This group will be a lifeline for you when you need ultra-local support. It is where you can ask for what doctors are at least familiar with PANS or PANDAS, and more importantly, which doctors you should definitely not see. It will also help you when you need PANS-literate therapists, tutors, child care, school advocates, etc. It is also where you can find local parents to connect with when you just need someone who understands.
If you don’t have someone known to understand PANS and PANDAS near you, you aren’t at a dead end. There are tools that can help you navigate a diagnosis with an unfamiliar but receptive doctor.
Diagnostic Criteria
PANS and PANDAS have different diagnostic criteria. This can end up feeling a bit pedantic, since there is a lot of overlap, and generally, someone who has PANDAS will ultimately end up meeting the criteria for PANS as well. It has finally even been acknowledged that PANDAS is a subset of PANS. But it is still important to know these differences as you are looking for support in getting a diagnosis.
First, PANS does not have an age requirement, but PANDAS does. For PANDAS, symptoms must become apparent between age 3 and the onset of puberty. This is due to the peak exposure time for strep. The challenge with this is that you can get strep throat at any age, and some may not get it at all until adulthood. You can also have a change in your environment, either internal or external, that impacts how your body reacts to the infection. Alas, as of this writing, the age requirement stands.
Second, both PANS and PANDAS require an abrupt, sudden onset of symptoms. This too has its challenges, because as many as 60% of kids in one study met the criteria for PANS but didn’t have the abrupt onset. I explore the possibilities for this in this article about sudden behavior change. For PANS, you need to have a sudden onset of obsessive-compulsive disorder or avoidant restrictive food intake disorder (ARFID). ARFID is different from an eating disorder. It is essentially a presentation of OCD where there is fear about the food being poisoned or choking, or an intrusive thought not allowing them to eat certain foods that aren’t about weight or appearance. In PANDAS, you must have a sudden onset of both OCD and tics.
PANS requires the presence of at least two additional neuropsychiatric symptoms, such as anxiety, rage, cognitive or behavioral regression, neurological symptoms such as tics or atypical movements, but also motor and sensory abnormalities. Changes in sleep and urinary changes, such as urinary frequency or new onset bedwetting, also count toward a diagnosis.
PANDAS no longer technically requires these additional changes or symptoms to get the diagnosis, but they are almost always present.
PANDAS diagnosis additionally requires that there be a relapsing and remitting course clearly associated with a strep infection.
Get a Diagnosis
PANS and PANDAS are clinical diagnoses. This means that there isn’t a single test that can prove your child has PANS or PANDAS. So having information about the symptoms and timing of onset is vital.
There is some testing that might be recommended, especially if you suspect PANDAS. Your provider might start with a throat swab for a rapid strep and/or culture, but this is only helpful if you actively have strep throat. Many kids with PANDAS don’t actively have strep throat at the time they get diagnosed. And many also don’t have symptoms suggesting that they have strep, and might never have.
Because of the limitations of rapid strep tests and cultures, your provider might test for antibodies to strep to demonstrate recency of an infection. These tests are ASO and Anti-DNase B titers. It is important to remember that these show evidence of past infection or exposure, not active infection.
In PANS cases, some doctors will run more expansive antibody testing to look for recent viral or bacterial exposures, particularly mycoplasma pneumonia. They might also run tests for Lyme and other tick-borne illnesses if they suspect that Lyme disease could be part of what you are dealing with.
There are some specialty labs, including the Cunningham panel, and a similar panel called the Neural Zoomer, that test for antibodies to your own cells or receptors. While these tests validate the presence of autoimmunity, they are not diagnostic. They also don’t guide treatment.
Finally, response to some medications can be supportive. If your child has been given antibiotics and their OCD stopped, this is important information to share. Similarly, if you have given anti-inflammatory medications, even over-the-counter medications like ibuprofen, and seen symptoms improve, this can also be helpful to share.
Diagnosis and Homeopathy
Homeopathic remedies are recommended based on symptoms, so people often wonder if there is any value in getting a diagnosis if they plan to use homeopathy for their care.
There are a few reasons that getting a diagnosis, or at least working with a medically trained homeopath, is helpful.
First, there are some things that homeopathy can’t help with. These include things like frank nutrient deficiencies and organs that are failing. A frank nutrient deficiency is when there is not enough of the nutrient being consumed and available to the body, or if there is an infection or disease process in the body causing a depletion. Think iron deficiency, either from low intake, heavy periods, or chronic infection. Homeopathy can help with the underlying cause of all of these things, and you will likely need to supplement short term to be able to see gains. Similarly with organ failure, homeopathy can only do so much if the tissue has already been damaged. If any of your symptoms suggest hypothyroidism, homeopathy might be able to help some, but you would need to be evaluated for the necessity of thyroid hormone replacement.
A medically trained homeopath can quickly identify these possible roadblocks to ensure appropriate measures are taken to get you the best results possible.
Additionally, knowing the diagnosis helps with remedy selection and management of the case. Knowing the diagnosis (and understanding it well) helps your homeopath differentiate which symptoms are more important for remedy selection, and which are less useful. It also gives them useful information for how to manage the case. PANS and PANDAS can overlap with many other conditions, some of which will typically have a more slow and steady response to homeopathy, and others have a more rapidly changing up and down pattern of healing. Co-existing conditions can also impact and influence both remedy selection and management, making understanding complete and accurate diagnosis even more important.
Other Reasons for Getting a Diagnosis
Many kids with PANS or PANDAS have difficulty with school. There is often great value in getting individualized education plans (IEP) or 504 plans in place for your child. Having a diagnosis is important for getting the full level of support you need.
Homeopathy might not be part of your plan for recovery, or it might only be part of your plan. If you have any consideration that you will use medications, supplements, or herbs, it is important that you have an accurate diagnosis. Children with PANS or PANDAS are often far more sensitive to medications, particularly psychiatric medications, than others. A child with OCD without PANS will often need a dose 4+ times larger than a child with PANS OCD can tolerate. On the flip side, children with PANS will often need a higher and longer dose of antibiotics than those without it. Accurate diagnosis helps to ensure you get appropriate care.
Talk therapy is another place where diagnosis matters. Therapy can be really helpful for kids with PANS once the inflammation is tamed. But it is less helpful early on in treatment, because the thoughts they are having are inflammation-based, not something they can control. Knowing if your child is struggling with situational anxiety, where therapy can help immensely, or inflammation-based anxiety, where therapy will be less effective, can help save you time and money.
Helpful Resource
For anyone whose best option for early diagnosis is a doctor with little to no PANS experience, the PANDAS Physicians Network has a very helpful flowchart available free online that simplifies the diagnostic process.
