HomeUnderstanding PANDAS and PANS | A Comprehensive Resource GuidePANDAS StoriesIVIG Treatment Shows Promise for 55 PANDAS Patients in New Clinical Study from Italy

IVIG Treatment Shows Promise for 55 PANDAS Patients in New Clinical Study from Italy

Italian researchers conducted a study to document the clinical experience of PANDAS patients receiving IVIG treatment. The results show promise for the future of IVIG’s role in treating patients.

In a 2020 study by Pavone et al., Italian researchers found significant symptom reduction in children with PANDAS/PANS. The article, “PANS/PANDAS: Clinical Experience in IVIG Treatment and State of the Art in Rehabilitation Approaches,” published in NeuroSci,documents the use of intravenous immunoglobulin (IVIG) treatments for patients in Italy with an extreme severity grade of PANDAS/PANS symptoms.

The study enrolled a total of 55 patients with a diagnosis of PANDAS/PANS whose symptoms were categorized as “extremely severe.” The study sample included 30 males (54%) and 25 females (46%), with an average age of 8.9 years old.

All patients received IVIG treatment at 2 g/kg per day for two consecutive days. This dosage is consistent with recent research about administering the drug.

Results from this Italian study are essential to diversifying treatment options for children with PANDAS/PANS. This study provides vital evidence for assessing the value of using IVIG. It also looks at the value other pharmacological and therapeutic approaches for managing a child’s symptoms.

What are IVIG treatments for PANDAS?

IVIG, or intravenous immunoglobulin, is an intravenous pooled blood product composed of immunoglobulins. Doctors use this to treat immune deficiencies, encephalitis and other medical conditions. The exact mechanism of IVIG that helps with harmful inflammation caused by autoimmune illnesses is not yet clear. New research is vital to provide additional evidence of the benefits of IVIG for PANDAS patients. This is especially because children with PANDAS can have difficulty getting insurance coverage for IVIG treatments.

Previous PANDAS research studies document the use of IVIG in conjunction with antibiotic therapy to prevent reinfection from bacterial agents and improve a patient’s symptoms. The current study assesses clinical features of Italian patients and evaluates the response in children with extreme PANDAS/PANS post-IVIG administration. More specifically, the study’s outcome is to verify a decrease in tics and OCD using the Children’s Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) severity score. Researchers considered the clinical response to treatment to be satisfactory. It lowered at least one degree on the CY-BOCS, which persists for at least one year after observation. “Considering the great impairment during their lives that extreme-grade patients have,” said the researchers, “moving to a lower grade would bring enormous improvement in daily living.”

How long does it take for IVIG to work for PANDAS?

Researchers noticed a clinical benefit from 3 to 30 days after IVIG therapy in the new Italian study. Eleven children (20%) showed PANDAS symptom remission in just a single administration of IVIG. Meanwhile 36 patients (65.5%) required a second administration for long-lasting improvement. In these 47 observed children (85%), noticeable improvement of symptoms was apparent for at least one year. The benefits ranged from symptoms decreasing from extreme grade to none (n=12), extreme to mild (n=22), extreme to moderate (n=9) and extreme to severe (n=4).

In the minority of cases (15%, n=8), researchers noticed a reappearance of symptoms within 1 to 6 months after the initial treatment response. A third IVIG cycle was performed one year after the first but did not significantly improve symptoms. A further workup is indicated in patients with an abnormal neurological examination, muscle weakness, abnormal reflexes or chorea. In these cases, an individualized rehabilitation treatment could reduce pain intensity and the number of hyperkinetic movements. After one month of rehabilitative therapy, all eight patients showed a reduction in symptoms. IVIG may not be a one-size-fits-all treatment option. But it can be a useful complement to other rehabilitative or pharmacologic therapies.

Do IVIG treatments cure PANDAS?

IVIG treatments offer several benefits for PANDAS patients, but researchers do not classify this novel treatment method as a cure. Healing is gradual over several months. In this study, IVIG shows promise for reducing severe neuropsychiatric symptoms in some PANDAS patients for at least one year. Researchers note the “great impairment” that symptoms may have on PANDAS patients. Even one degree lower on the CY-BOCS represents “enormous improvements in daily living.”

Absent a cure for PANDAS/PANS, the right combination of medications and therapies can lead to a complete remission of symptoms for patients. How each child will respond to IVIG treatment is still unclear. IVIG is an expensive procedure with risks, limiting its application to PANDAS children with severe symptoms. Additional research is needed to develop more precise knowledge about the accuracy of IVIG treatment for PANDAS patients with different symptoms and at varying levels of severity.

What implications will this study have on patient care?

This study demonstrates how IVIG benefits PANDAS patients in Italy. We still have much to learn about the etiologic nature of PANDAS. So this study is an important step forward in understanding different approaches for successful PANDAS treatment. Researchers and clinicians worldwide benefit from this study’s results, as it provides crucial context for how IVIG is valuable when used alone and with other drugs, psychotherapy and rehabilitative approaches for PANDAS/PANS.

Parents can use the results from this study to better advocate for their children. Currently, PANDAS/PANS children have a difficult time getting insurance coverage for IVIG treatments. Parents can discuss the benefits of IVIG with their healthcare providers when other treatments fail to treat their child’s symptoms. New clinical research that supports IVIG as a reliable treatment method for PANDAS can change the current standard of care for PANDAS patients as more clinicians become aware of the benefits of IVIG.

What implications will this study have on clinicians?

Researchers do not tout IVIG treatments as a cure-all for PANDAS. However, physicians can use IVIG as a complementary therapy to pharmacologic (drugs like antibiotics and SSRIs), rehabilitative (physical therapy and exercises) and psychotherapeutic (cognitive behavioral therapy) approaches. Any infection can exacerbate symptoms in a child while healing. So carefully managing other exposures and illnesses is vital while on an IVIG treatment protocol.

Clinicians and healthcare providers offer advice and recommendations for care to PANDAS patients and families. However, doctors can only provide advice based on the latest clinical research and current practices. This study conducted by Pavone et al. is essential because it adds to the growing body of evidence about PANDAS/PANS and how to treat patients with these disorders. Although the study was conducted in a small sample, clinicians can use this information to make informed decisions about the care for their own PANDAS/PANS patients.

What are the major takeaways from this study?

This study is consistent with current literature about IVIG treatment as a benefit for PANDAS/PANS patients. PANDAS is an autoimmune disorder that causes encephalitic-like neuroinflammation. Since IVIG addresses inflammation that is autoimmune in nature, a consortium of physicians and researchers currently endorse IVIG for treating PANDAS. Previous research documents 2 g/kg per day as the standard IVIG dosage outlined by the PANDAS Physician Network. This study confirms this dosage as a suitable approach for PANDAS patients with severe symptoms.

Research is not conducted without limitations. In this study, Pavone et al. document the lack of a control group as well as a short follow-up period as barriers to confidently concluding the efficacy of IVIG treatment for PANDAS patients. Despite these limitations, this study still presents strong evidence for IVIG as a safe and effective approach for the clinical management of PANDAS patients. Although IVIG may be an “accessory approach,” meaning an added value to other PANDAS treatments, like antibiotics, it shows great promise for reducing severe symptoms in children living with PANDAS/PANS.

We are thankful to Pavone et al. and researchers in Italy who dedicated their time and effort to documenting improvements in symptoms for PANDAS patients. Children all across the world will benefit from the new knowledge generated from this research.

Read more about IVIG and other PANDAS treatment options on our website.