When the possibility of PANDAS and PANS sneak up, it’s important to remember: You aren’t crazy. Your child isn’t crazy. If they have developed OCD symptoms over a short period of time, they might have PANDAS.
While this is often a scary time for a parent, there are several options for PANDAS and PANS treatment.
Unfortunately, some doctors write PANDAS off as controversial, just because it was only discovered a little over 20 years ago and presents a radically new way to think of mental illness. This can be frustrating when you, as a parent, KNOW that something is up with your child.
It is estimated that 1 in 200 children are affected by PANDAS. PANDAS occurs more often in boys but is rare after puberty.¹
Parenting a child with PANDAS can be tough. So we wanted to make this easy. Read on to learn about 14 Available PANDAS treatment options.
What is PANDAS? PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus.”
In layman’s terms: PANDAS describes a situation where a Group A streptococcal infection (strep throat) is able to trick a child’s immune system into attacking part of a child’s own brain called the basal ganglia.² This leads to a child developing abrupt onset OCD (obsessive-compulsive disorder) and other symptoms.
What are the symptoms of PANDAS? The diagnostic criteria for PANDAS are broken up into eight symptom categories:
What is PANS? Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS, describes the same situation, but instead of a strep infection, the symptoms can be brought on by a number of infections or toxins — a list which is still growing with ongoing research.
The National Institute of Mental Health recognizes antibiotics, steroids, IVIG, and plasma exchange as treatments for PANS/PANDAS. These are actually research-backed treatment options.
Read below about the following 14 PANDAS treatment options, complete with our grade on how effective it is, how much research is behind it, the potential for side effects, estimated cost, and if it’s typically covered by insurance.
Cognitive-behavioral therapy helps families grapple with a child’s behavioral changes. Though not always effective by itself, it can greatly improve quality of life while the child has OCD.³
Here, children may learn to name their OCD, argue against their OCD, and confront their fears in a controlled manner.
Cognitive-behavioral therapy is shared between the child and parent. Both learn to cope through stress-reducing rituals and avoidance strategies.
One clinical trial found children with PANDAS saw a 49% reduction in symptoms after cognitive behavioral therapy.⁴
If a child exhibits symptoms of OCD after an infection has gone away, or if a child exhibits residual symptoms after the fact, cognitive behavioral therapy is definitely worth looking into.
Intravenous immunoglobulin (IVIG) contains antibodies that are used to treat immune system disorders. Since PANS and PANDAS are autoimmune disorders, IVIG helps ameliorate the confused immune response the infection or toxin has caused.
IVIG is typically made up of 95% unmodified immunoglobulin G, from upwards of a thousand human blood donors.⁵
Early studies suggested IVIG was an effective PANDAS treatment.⁶
It is still unknown how exactly IVIG can treat PANDAS, but the FDA has approved it for treating other immune function disorders in minors.
IVIG likely reduces or neutralizes the confused antibodies (that are attacking the brain) in your child’s system, but it doesn’t decrease the number of confused antibodies your child’s body still makes.
Side effects of IVIG include headache, fatigue, irregular body temperature, and nausea. It is also a very invasive procedure.
Typically Covered by Insurance: Sometimes (depending on where you live and what the diagnosis is). We are currently working with legislators in Indiana to pass a law that would prohibit insurance companies from denying coverage for IVIG just because the diagnosis is PANS or PANDAS.
Plasmapheresis (AKA plasma exchange) is a process of cycling a patient’s blood through a machine where the blood cells are separated from the plasma (the liquid part of the blood). The machine replaces the patient’s plasma with new plasma.
This treatment is viable because the plasma carries antibodies different than the ones wrongly attacking the child’s brain.
One clinical trial showed some level of improvement in every single PANDAS patient who had plasmapheresis therapy.⁷ Upon follow-up, PANDAS symptoms improved 78% on average.
Plasmapheresis has been described as “essential” in PANDAS treatment. However, it is invasive and may be uncomfortable.⁸
In a few case reports, tonsillectomy (removal of tonsils) stopped PANDAS in its tracks.
A 2018 literature review found weak support for this procedure.⁹
Likely, a tonsillectomy may treat PANDAS only because it may treat a strep infection. Since it helps avoid future strep infections, it may give parents peace of mind.
Antibiotics could be the right option for your child, especially in the early stages. It is probably the most widely-used treatment option, but only because antibiotics (like penicillin and azithromycin) have the most robust research.
A small-scale study showed that antibiotics are effective in two-thirds of moderate PANDAS cases.¹⁰
A recent scientific review revealed that antibiotic therapy is a well-established PANDAS treatment when a strep infection is ongoing.¹¹
However, if PANDAS persists after an infection is dealt with, antibiotics may not be the right choice.
If your child undergoes antibiotic therapy, it may be wise to counter-treat with probiotics, to maintain your child’s immune health. Since antibiotics kill both good and bad bacteria, probiotics may be required to reintroduce good bacteria into your child’s gut microbiome, which can affect the immune system. Probiotic counter-treatment can also prevent antibiotic-induced diarrhea.
Steroid therapy, such as using corticosteroids, has exhibited positive results in some children with PANDAS.¹²
Short bursts of steroids may be the safest and most effective method of corticosteroid therapy. With more than a month of steroid therapy, a child’s risk of side effects increases.
Unfortunately, corticosteroids sometimes lead to an increase in aggressive behavior.
NSAIDs alleviate PANDAS symptoms, but not as effectively as other treatments.¹³ However, the research is pretty consistent: NSAIDs help with PANDAS.¹⁴
Since NSAIDs can come with adverse side effects (heartburn, stomach pain, dizziness, itchiness, blurred vision, etc.), we suggest all-natural anti-inflammatories, like curcumin and ginger.
Recent research reveals PANDAS patients are significantly more likely to have a vitamin D deficiency than control groups.¹⁵
Nine out of ten children with PANDAS may need more vitamin D — whether from their diet, exposure to sunlight, or dietary supplements.
Part of “clean living” is eating well. Adopting an anti-inflammatory diet can promote whole-person wellness and strengthen your immune system.
To curb inflammation that is linked to autoimmune disorders (like PANDAS), cut these from your child’s diet:¹⁶
Also, consider natural anti-inflammatories like omega-3 fatty acids, curcumin, and Boswellia.
Selective serotonin reuptake inhibitors (SSRIs) are sometimes used to treat OCD symptoms.¹⁷ Our own clinical experience and research studies have found less than half of PANDAS patients respond well to the treatment.
Now, 40% effective isn’t a bad figure — especially with such a new disorder — but there are safer, more effective PANDAS treatment options.
Examples of SSRIs include:
A troubling side effect of SSRIs can be suicidal thoughts in children. For this reason, we suggest close supervision and communication with your doctor.
Antipsychotics have been used to treat PANDAS, but they are not very effective.¹⁸
Side effects add to the pile of reasons to try other treatment options.¹⁹
Antihistamines boost the immune system, reduce inflammation, and help many children sleep.²⁰ In these ways, antihistamines are a low-cost PANDAS treatment option.
Close monitoring is necessary since some children react badly to antihistamines. They may become more agitated instead of sleepy.
Treating strep infections can lead to PANDAS going away. As long as the child is not re-infected with strep, PANDAS may be in your rearview mirror.
As with all our treatments, we follow a Fully Functional model:
Once you receive a clinical diagnosis of PANDAS, you will want to live the healthiest daily life you can live.
Combining treatment options with lifestyle adjustments gives your child the best chance at recovering from PANDAS. Learn more about Fully Functional® living here.
If you suspect that your child might have PANS or PANDAS give us a call at 317-989-8463 or contact us here. The Center for Fully Functional® Health is located in Carmel, Indiana. We are experts in the diagnosis of PANS/PANDAS— even helping our own daughter to recover from PANS a few years ago.
Since PANDAS was only identified for the first time in 1998, long-term PANDAS studies are basically non-existent. But there are some things we know about the long-term outlook of any child dealing with PANDAS.
Can a child outgrow PANDAS? Yes, but that is not always the case. Some PANDAS patients live with OCD symptoms into adulthood.
In some cases, untreated PANDAS can go away then come back — like a wave.
After a strep infection is treated, we suggest a child’s toothbrush be replaced. Anything to avoid getting re-infected with strep is likely a good call.
What happens if PANDAS is left untreated? Untreated or unrecognized PANDAS can increase the likelihood a child will have OCD and the associated symptoms longer.
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