How do you treat PANS/PANDAS?

As if navigating the difficulty of getting a diagnosis wasn’t enough, the treatment for PANS and PANDAS isn’t straightforward either. There is a standard of care recommended in the conventional realm, but because of limitations in efficacy, many doctors who specialize in PANS and PANDAS quickly jump to higher levels of interventions. At Resilience Naturopathic, we think it is vital for people to know what their options for care are and what the pros and cons of each are.

Conventional Care for PANS/PANDAS

The treatment guidelines state that a physician should start with antibiotics, anti-inflammatory medications, and symptomatic treatment, typically SSRIs and/or therapy. Antibiotics are typically prescribed for a longer course than for a typical infection, usually 3-4 weeks.

• PRO: Generally covered by insurance, at least to start.
• CON: Not always covered by insurance, and many providers skilled in PANS/PANDAS don’t accept insurance (this is true in other approaches to treating PANS/PANDAS as well). Treatments offered have risk, and for many, prove to be insufficient. Most conventional doctors who understand PANS/PANDAS have very long wait lists, and treatment could be delayed by up to a year.

Antibiotics for PANS/PANDAS

For many families, especially when they have a clear strep-related onset (PANDAS), antibiotics feel like a miracle. With the first flare of PANDAS, antibiotics will often have their child back to themselves within a few days. The difficulty is that many also find that once they stop the antibiotics, the symptoms start to come back, even in the presence of other treatments. Others will see symptoms resolve for a while after stopping the medicine, but then the next time their child gets sick, their neuropsychiatric symptoms flare again. They start antibiotics once again, expecting a miracle, only to find the medications don’t work as miraculously as they had before. Many kids with PANS/PANDAS will end up on long-term (think years) antibiotics.

• PRO: Antibiotics can work really quickly and help get you out of crisis. They are easily accessible through many providers, even without expertise in PANS/PANDAS. Insurance will often cover even prolonged antibiotic use.
• CON: Antibiotics disrupt the microbiome and contribute to intestinal hyperpermeability (AKA leaky gut). This can increase systemic inflammation and might be part of why antibiotics stop working as well for many. Prolonged use of antibiotics can lead to resistant bacteria. Most kids with PANS end up with multiple triggers and might need to be on multiple antibiotics, increasing the concerns. Antibiotics kill the infection, but they don’t actually address why the child is having an atypical reaction to the infection.

Anti-inflammatory Medications for PANS/PANDAS

Most PANS doctors will start with over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs). Think motrin or naproxen. They will typically recommend that they be taken around the clock, dosing dependent on the specific drug and age/weight of the child. When these aren’t helpful enough, the next step for recommendations is steroids. These are generally recommended as a short-term steroid burst, where you are given a higher dose for a short period of time, or a longer taper, where each week you gradually decrease the dose. A burst is usually for 5 days, whereas a taper typically lasts 4 weeks.

• PROS: With inflammation being central to flares, anti-inflammatory drugs can relatively quickly decrease symptoms. The OTC medications are inexpensive, easily accessible, and come in flavors children tend to tolerate well. The prescription medications are usually covered by insurance.
• CONS: These drugs all come with some significant side effects when used long-term (even short-term with steroids). None of these medications address the cause of the inflammation. People who have Lyme disease should not use steroids, and many parents don’t know that their child has Lyme disease. Steroids can also increase rage and anxiety in some kids, even without Lyme. Conventional testing for Lyme disease is notoriously bad, and without typical Lyme symptoms, many doctors won’t even order the test.

Psychiatric Medications for PANS/PANDAS

The medications typically recommended are selective serotonin reuptake inhibitors (SSRIs). These include Zoloft/sertraline and Prozac/fluoxetine, which are the most commonly prescribed for kids with PANS/PANDAS. Children with PANS or PANDAS-induced OCD, anxiety, depression, etc, might find some relief from these medications, but it isn’t typically fast. These medications take 2-6 weeks to show their full effect, both good and bad. This matters with PANS/PANDAS kids because they tend to be very sensitive to the medications and are more likely to have side effects, even at lower doses. A provider trained in PANS/PANDAS will likely know this and give a lower dose than the typical starting dose, but if you are working with a general practitioner or pediatrician, they might not be aware that most kids with PANS/PANDAS need approximately ¼ the typical dose. There is some genetic testing available that predicts the likelihood of a medication having side effects in a patient; however, these have not proven to be as reliable in the PANS/PANDAS population as they are in the general public, likely because of the different underlying cause of the symptoms.

• PROS: When they help, they are effective in giving relief from some of the most debilitating symptoms associated with PANS/PANDAS. They are often covered by insurance.
• CONS: They have some high-risk side effects, including black box warnings for increasing suicidal ideation in children. Once you start, they can be difficult to stop, and have higher risk if stopped abruptly. Like other therapies mentioned above, they are not addressing the underlying cause of the symptoms; they are just palliating them, so once you stop, the symptoms often return.

Therapy for PANS/PANDAS

Various therapy strategies are recommended to support children with PANS/PANDAS. Some common approaches are cognitive behavioral therapy, exposure response prevention (for OCD), and habit reversal therapy (for tics and compulsions).

• PROS: Therapy is relatively low risk and is often covered by insurance. For people who are hesitant to use psychiatric drugs, this is a way to approach symptoms without medication.
• CONS: Therapy is hard work and often takes longer than medications. Many people with PANS/PANDAS report that they don’t have success with the tools learned in therapy when in a flare, because behaviors are inflammation-based.

Additional therapies for PANS/PANDAS

Beyond the standard recommendations, many conventionally oriented PANS/PANDAS providers will recommend tonsillectomy, intravenous immunoglobulin (IVIG), Rituxan (rituximab is the generic), and plasmapheresis.

Tonsillectomy for PANS/PANDAS

This is recommended as a strategy to reduce the frequency of infections. When working properly, the tonsils are a helpful part of the immune system and work to fight infections. When the immune system is not working properly, they can actually trap bacteria and viruses, and cause persistent infections and PANS/PANDAS flares.

• PROS: This is another procedure often covered by insurance. In some cases, it can help reduce the frequency of infection.
• CONS: The surgery has a painful recovery that takes about 10+ days. While it can remove a “trap” for germs, it doesn’t actually address the body’s atypical reaction to the germs. For many people, it helps reduce flares short term, but it doesn’t last. Most people continue to need ongoing treatment after tonsillectomy.

IVIG for PANS/PANDAS

With this therapy, patients are given immunoglobulins (immune proteins) from donors by IV. Immunoglobulins are isolated from plasma donations. It is essentially borrowing the immune system from other people. Infusions are usually needed monthly.

• PROS: It might be covered by insurance (depending on where you live). It can help the body have a normal response to infections.
• CONS: It might not be covered by insurance (depending on where you live). When not covered by insurance, cost is typically around $10,000 per infusion. People often need many monthly infusions, and many report decreasing effectiveness over time. The infusions take many hours to administer, and often cause side effects like headaches, though these can be reduced by the co-administration of steroids. Because IVIG comes from pooled blood products, there is risk for exposure to infections that we don’t yet know to screen for. Finally, IVIG doesn’t replace your immune system, so you can still have an atypical and misdirected immune response if you stop getting treated.

Rituxan/rituximab for PANS/PANDAS

This monoclonal antibody works to destroy B cells, a part of the immune system. If these cells aren’t present, they can’t misbehave. It is given by infusion every 6 months.

• PROS: Many people report full symptom suppression with this therapy.
• CONS: Insurance coverage is difficult for this treatment, though legislative initiatives might change this. Out-of-pocket costs typically start at $30,000 per infusion. Treatment typically needs to be ongoing because it doesn’t change the way your immune system responds to infections. This therapy also comes with some fairly concerning warnings/risks.

Plasmapheresis for PANS/PANDAS

This is very infrequently used in PANS/PANDAS cases, but it does happen. This is a procedure where the patient’s own blood is filtered through a system that separates red blood cells from plasma. The patient’s plasma is replaced with a plasma substitute and then returned to the body. The goal is to remove the misbehaving immune cells.

• PROS: Possible relief of symptoms in the period before new cells are generated.
• CONS: It is an invasive procedure, and not always covered by insurance. It is considered to only be a short-term symptomatic treatment, much like the therapies mentioned above.

Functional/Integrative Care for PANS/PANDAS

Functional and integrative medicine will often use natural therapies (think herbs and supplements) to address infections, inflammation, and symptom relief in much the same way that conventional therapies do. Some doctors will even use the same medications described above alongside natural therapies. You will also likely find dietary changes and a deeper look for underlying factors that contribute to the symptoms.

Functional and integrative medicine takes a more investigative and personalized approach to treatment than conventional medicine, so there isn’t a standard of care that is as narrow and specific to outline. There are, however, patterns to the approaches taken that we can look at. The exact recommendations will be dependent both on your specific case and the preferences and practices of the provider. It is important to note that most, like conventional doctors, most functional medicine practitioners who understand PANS/PANDAS have very long wait lists, and treatment could be delayed by up to a year.

Functional Medicine PANS/PANDAS Testing

Testing is something that will come up in multiple areas, so before we get to the approaches, let’s look at testing in general. Functional and integrative medicine does a lot of testing. You will likely be recommended specialized testing for infections, particularly tick-borne illnesses. You could also be recommended tests to assess for gut function, nutrient status, genetic variants, food allergies, and toxic burden, including mold testing in your home. The specific tests recommended for you will be dependent on your case and the preferences/habits of the provider you are working with. Many people who work with functional providers are given recommendations for many, and even all, of these tests.

• PROS: Many of these tests can give you valuable information that can improve your outcomes and help guide specific treatment recommendations. Non-conventional immune/infectious testing will often give you a greater chance of a positive result (meaning they are more likely to find evidence of an infection – but this comes with a con as well – keep reading).
• CONS: While these tests are often more sensitive (meaning you are more likely to get a positive result), they are also often less specific, which means you are also more likely to get a false positive. Some tests are so imprecise that doctors will draw 2 vials of blood from the same person at the same time, send in the samples with different patient names to the same lab, and get very different results. These tests are generally not covered by insurance and usually cost several hundred dollars each. Treatments recommended by these tests are also often not covered by insurance and can often cost $500+ per month.

Fight Infections in PANS/PANDAS

Much like the conventional approach, functional/integrative doctors are going to look for and treat any infections. They will often run labs that a conventional doctor doesn’t run, and use herbal combinations instead of (or in addition to) antibiotics. They will also work to support the immune system to work more effectively.

• PROS: There are some bacteria that respond better to herbs than conventional antibiotics. The herbs can have more synergistic impacts and can help you in more than one way. More comprehensive testing can give you a better understanding of what you need to address.
• CONS: Tests for infections are among those with high sensitivity and lower specificity, so you might get false positives. Herbs are not manufactured or regulated with the same scrutiny as medications. This means that you really have to know and trust the brands you use to make sure they have the purity you need and the dosage you are looking for. Additionally, not all parts of the plant have the same action, and the active constituents you are looking for will be more present in one preparation method over another. You will likely need to get the exact recommendation, including brand, that your provider recommends. Some providers private-label commercial brands to make sure you are getting what they want. Herbs are still just fighting the infection and not addressing the way the body is reacting to the infection.

Reduce Inflammation in PANS/PANDAS

Much like conventional doctors, functional and integrative doctors are going to address inflammation. Their approach will be more comprehensive, however. They are going to look for underlying causes of inflammation and address them both by using conventional and natural anti-inflammatory medications, herbs, and supplements. But they are also going to look for what might be causing inflammation. They will run tests to look for things like mold exposure, poor detoxification, or heavy metal loads in the body. They will look for leaky gut and food sensitivities.

You will likely get a few supplement recommendations aimed at reducing inflammation, lowering histamine, and healing the gut. You might get detox protocols. You will also, almost certainly, get put on a therapeutic diet. You will most likely be told to go gluten and dairy free at the bare minimum, and probably be given more restrictions/guidelines based on lab testing and clinical signs and symptoms.

You will also likely get lifestyle recommendations for sleep, exercise, limiting screens, etc. Some providers might recommend things like castor oil packs, saunas, cold plunges, red light therapy, hyperbaric oxygen therapy, and detox foot baths. I am sure there will be new things that I could add to this list every year.

• PROS: Reducing inflammation can help take the edge off symptoms. Following a diet doesn’t have to be a big expense. A healthy diet, which many of these therapeutic diets are trying to get closer to, is vital for any healthy body, regardless of the condition you are dealing with. Finding hidden triggers of inflammation in your environment is also vital for healing. Anti-inflammatory supplements usually have a lower side effect and risk profile with prolonged use than medications. Lifestyle interventions are always helpful when you actually have time to do them.
• CONS: Restrictive diets are hard. They can be costly if you are trying to replace gluten and dairy with alternatives, even more so if your practitioner has also instructed you to buy only organic. They can have rebound effects as well, leading to excessive consumption of “forbidden foods”. Some gluten/dairy-free alternatives are extremely processed and can be just as inflammatory (if not more so) than the less processed gluten/dairy-containing versions. On the other hand, for kids with avoidant restrictive food intake disorder (ARFID), therapeutic diets can exacerbate this. Another challenge with ARFID kids is that they might not actually eat anything except what you are being told to avoid. Supplements will start to stack up, and you might have a hard time getting kids to take them all. And of course, supplements are usually out-of-pocket expenses. Sometimes, too many lifestyle interventions can actually increase the stress as they start to feel like chores that have to be completed, thereby counteracting at least some of their intended purpose.

Supporting Systems in PANS/PANDAS

Functional doctors are particularly focused on the overall function (get it?) of your vital systems. They will look for signs of where you have immune or neurological weakness, difficulty detoxing, hormone imbalances, and digestive concerns. They will look for nutrient status that can help drive all of these things, especially when the body is stressed. This is where supplement protocols will often start to get more intense. You could get high-dose nutrients to drive certain biochemical pathways. You could get detox protocols to both mobilize identified toxins and then bind them to help make sure as much as possible is excreted from your body. You could get leaky gut protocols, hormone-balancing protocols, and neurotransmitter modulating protocols. Most protocols come with 2-4 supplement recommendations, though some doctors are very intentional at limiting how many things they recommend.

• PROS: All of these systems are stressed with PANS/PANDAS, and supporting them generally helps reduce symptoms. Other protocols targeting specific symptoms or infections can work better if our vital systems are supported.
• CONS: None of these approaches really solve the reason that the systems were weakened in the first place; they are just giving extra force on the body to try and make them work better. Once you stop taking the supplements, symptoms often return.

Classical Homeopathy for PANS/PANDAS

Classical homeopathy is the most individualized of all the therapies outlined here. There are no protocols. A client is given a single remedy at a time based on their individual needs and experience of their condition. It takes into consideration the totality of the case. So rather than giving you a protocol for gut health, one for detox, one for immune function, and one for mental/behavioral symptoms, a homeopathic doctor will find the one best remedy that addresses all of these things and the specific way you experience them.

Homeopathy works at the deepest level of underlying cause – susceptibility to the atypical and misdirected immune response. Susceptibility encompasses the vital systems that have been weakened, so you see more appropriate immune response, stronger gut function, improved detox, and balanced hormones over time. Because homeopathy works at the deepest level of susceptibility, you actually heal over time with use. The goal is to eventually no longer need to use homeopathy on a regular basis, and have a normal immune response and general health and wellbeing without the need for a pill or supplement.

A classical homeopath will take a detailed review of your case and health history to find the best match for your symptoms. They will recommend a single remedy at a time, often needing more than one over the course of a few years to reach full recovery. A homeopathic doctor will also look for obstacles to health, many of which overlap functional medicine, but will use tests sparingly and only when vitally important. Lab tests do not guide remedy selection. Some homeopathic doctors will make dietary recommendations, but the goal should be short-term, as homeopathy can help restore healthy eating patterns, including food acceptance and reducing food sensitivities.

• PROS: Homeopathy actually helps you heal so that you can fully recover from PANS/PANDAS. Homeopathy is not something you should expect to need forever. Homeopathy is safe and gentle, even for kids who have had negative reactions or side effects to many other things they have tried. Homeopathy relies on symptoms to select remedies, so if your labs are “perfect” in spite of your challenges, homeopathy can still help. Homeopathic remedies are very inexpensive, so your only real cost is the visit and expertise of your doctor.
• CONS: Homeopathy takes time. It isn’t a linear path to full recovery, and you will likely see a lot of ups and downs. Homeopathy requires patience and persistence. Homeopathy is not covered by insurance.

Choose the path that is right for you

As you can see, there are pros and cons to any form of therapy that you decide to take when you are faced with PANS/PANDAS. You have to find the right fit for your family. All of these modalities can be used together, so you don’t necessarily have to choose. But it is important to know that using everything together will not make the road to recovery faster. It might make it easier, but it will add a layer of complexity that can make it take longer to fully heal. We always recommend that families consider not only what they want right now, but what their goals are for the long haul, so they can make sure the approach they are taking is in alignment with their goals.