Emily, an active 8-year-old who loved soccer and playdates, changed almost overnight after a routine strep throat infection and a tick bite that seemed harmless at first. Shortly after, she became consumed with obsessive thoughts about getting hurt during games, refusing to play or even step onto the field. Her parents felt helpless as traditional treatments failed to help. It wasn’t until they tried IVIG (intravenous immunoglobulin) that they began to see their daughter return—smiling, laughing, and kicking a soccer ball again.

Emily’s story is one that resonates with countless families navigating the challenges of PANDAS, a condition now recognized as a distinct clinical syndrome. One day, your child is thriving—playing, laughing, and enjoying life—and the next, everything changes. Intense fears, repetitive behaviors, and emotional outbursts appear seemingly overnight, leaving you confused and searching desperately for answers.

What is PANDAS?

(Pediatric Autoimmune Neuropsychiatric Disorders)

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. It is a subset of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and is linked to sudden onset of obsessive-compulsive disorder (OCD) and/or tic disorders following a streptococcal infection, such as strep throat.

This condition arises when the immune system mistakenly targets the brain, leading to a cascade of neuropsychiatric symptoms. Children with PANDAS often experience:

• Sudden behavioral changes such as OCD, anxiety, or tics.
• Emotional outbursts and mood swings.
• Severe separation anxiety and sleep disturbances.
• Regression in skills like handwriting or math ability.

While the exact mechanisms remain unclear, researchers believe that strep infections can trigger an autoimmune response, resulting in inflammation in the brain and the accompanying symptoms.

IVIG Treatment for PANDAS

When first-line treatments like antibiotics, cognitive-behavioral therapy (CBT), and anti-inflammatory medications fail, families may explore IVIG therapy. IVIG therapy involves IVIG infusions, where purified antibodies are infused directly into the bloodstream, aiming to modulate an overactive immune system.

Another treatment option for PANDAS is therapeutic plasma exchange, which can help improve the condition of affected children.

How IVIG Works

• Immune System Reset: IVIG helps “reset” the immune system by interacting with immune cells to reduce inflammation and suppress autoimmune responses.
• Symptom Reduction: Many families report improvements in OCD, tics, and emotional regulation following IVIG.
• Neurological Support: IVIG may lower brain inflammation, which is a key contributor to PANDAS symptoms.

How Does Intravenous Immunoglobulin Work for PANS/PANDAS?

IVIG works specifically in PANS/PANDAS by targeting autoantibodies and modulating the immune response that leads to neuropsychiatric symptoms. It helps alleviate symptoms such as obsessions, compulsions, mood swings, and anxiety, which are critical aspects of mental health.

One study investigated the treatment of PANS/PANDAS using intravenous immunoglobulin therapy, focusing on treatment of 55 extreme-grade symptomatic patients. IVIG treatments given at 2 g/kg per day for two consecutive days resulted in significant symptom improvement or complete remission for 85% of the children, with some requiring a second administration for lasting improvement (Pavone et al., 2020).

It’s important to work closely with an immunologist throughout the treatment process as they also play a vital role in the management of PANS and PANDAS (Bellanti, 2023).

Understanding IVIG Infusion

IVIG infusion involves the administration of Immunoglobulins directly into a patient’s bloodstream via intravenous (IV) access. These antibodies serve as reinforcements for the immune system to help regulate and balance its response. It also contains anti-inflammatory properties to help to quell the immune system’s overactive response often seen in conditions like PANS/PANDAS, including pediatric autoimmune neuropsychiatric disorder (PANDAS).

Preparing for IVIG

Before IVIG therapy, the healthcare team will conduct a thorough assessment to ensure your child is ready for the treatment. This may involve blood tests, vital sign monitoring, and a review of medical history. 

IVIG Infusion Process

When on the IV Immunoglobulin therapy, your child will be comfortably seated or reclined as the IVIG solution is slowly administered through a needle or catheter inserted into a vein. The duration of the infusion can vary depending on factors such as dosage and tolerance. It typically ranges from a few hours to a full day. 

Most children with PANS or PANDAS do multiple IVIG treatments: typically 6 to 12 with some individuals needing 20 or more. These treatments are done over one to two days in a single month with a gap of one month before the next treatment.

Monitoring IVIG Side Effects

Throughout the infusion, your child will be closely monitored by healthcare professionals for any side effects of IVIG infusion, including an adverse IVIG reaction. Vital signs such as blood pressure, heart rate, and temperature may be checked regularly to ensure safety and comfort. Your healthcare team will be standing by, equipped with strategies to mitigate any discomfort and ensure a smooth voyage.

Tracking Progress

The monitoring of your child’s Immunoglobulin IV infusion treatment will continue and the healthcare team will check on your child’s progress closely. They will be assessing symptom onset and improvement, and fine-tuning treatment as needed. Always remember that healing doesn’t occur overnight. Patience is key.

What to Expect with IVIG Treatment

The Treatment Process

The process of IVIG treatment may sound intimidating at first, but many families find it to be a manageable and hopeful step toward healing. The treatment involves a series of intravenous infusions, with each session lasting several hours. While this requires some time and patience, many parents feel reassured knowing they’re taking proactive steps to help their child.

Results can vary—some children show improvements within just a few days, while others may need several weeks or multiple treatments to see significant changes. Despite this variability, many patients experience a significant improvement in symptoms, highlighting the effectiveness of the intervention. Typically administered in a hospital or outpatient clinic, the setting is designed to ensure your child’s comfort and safety throughout the process. Families often describe the experience as a pivotal turning point in their journey to restore their child’s health and well-being.

Potential Benefits

• Reduction in OCD symptoms and anxiety.
• Improved focus, behavior, and overall emotional stability.
• Enhanced quality of life for the child and their family.
• Particularly effective for children experiencing moderate to severe symptoms of PANDAS.

Potential Side Effects and Risks

Like any medical treatment, IVIG carries potential risks, and parents should weigh these carefully with their healthcare provider. While IVIG can be a powerful tool in managing PANDAS/PANS, understanding the possible side effects and risks ensures that families are well-prepared for the process.

Common Side Effects

Although generally mild, some side effects of IVIG can cause discomfort during or after infusions:

• Headache: This is one of the most commonly reported side effects, likely caused by changes in fluid levels or the infusion rate. Ensuring proper hydration before and after treatment can help alleviate this issue.
• Nausea and Vomiting: Some children may feel queasy or experience gastrointestinal upset during infusions. Medications or adjustments in the infusion rate can help reduce this.
• Fever and Chills: A low-grade fever or chills may occur as the body reacts to the infusion. These symptoms are usually temporary and resolve quickly.
• Fatigue: Feeling tired or run-down is common after an infusion, as the body adjusts to the therapy. Rest and hydration are important during recovery.

Rare but Serious Risks

Though uncommon, IVIG does carry the potential for more severe complications that require immediate medical attention:

• Anaphylaxis: This severe allergic reaction can occur during or shortly after an infusion. Symptoms include difficulty breathing, swelling, and a drop in blood pressure. Infusion centers are equipped to manage such emergencies.
• Blood Clots (Thrombosis): IVIG can increase the risk of blood clots, especially in individuals with pre-existing conditions. Symptoms like swelling, pain, or redness in the limbs should be reported immediately.
• Hemolytic Reactions: This rare complication involves the destruction of red blood cells and may cause symptoms like dark urine, fatigue, or jaundice. Prompt medical intervention is crucial.

Monitoring and Safety

To minimize risks, close monitoring during and after infusions is essential. Infusion centers typically check vital signs, including heart rate, blood pressure, and temperature, to detect any adverse reactions early. Parents should watch for signs of serious complications at home and report any concerns to their healthcare provider immediately. Working closely with a knowledgeable medical team ensures that any side effects are managed promptly and effectively, making IVIG a safe and beneficial treatment option for most patients.

Research and Clinical Significance

A notable study published in Frontiers in Neurology in 2021 examined the clinical features and therapeutic approaches in a cohort of Italian patients diagnosed with PANDAS/PANS. The research provided valuable insights into the sudden onset of obsessive-compulsive disorder (OCD) and tic disorders associated with these conditions. The study emphasized the importance of early diagnosis and individualized treatment plans, including antibiotics and intravenous immunoglobulin (IVIG), to improve outcomes for affected children. (Rea, et al., 2021).

Emerging research highlights IVIG’s potential benefits for PANDAS, but there’s still much to learn.

• Positive Outcomes: Studies and anecdotal reports from families indicate that IVIG can significantly reduce symptom severity and improve daily functioning.
• Limitations: Research is ongoing to establish its long-term efficacy and safety for PANDAS patients. In clinical trials, the role of long-term antibiotic prophylaxis is crucial, as it must remain unchanged one month prior to and during the trial to ensure treatment consistency and the validity of the trial results.
• Future Directions: As understanding of autoimmune neuropsychiatric conditions grows, IVIG’s role as a treatment option will continue to evolve.

Is IVIG Right for Your Child?

Deciding whether an IVIG treatment is the right choice for your child is a personal journey, but it’s one filled with hope for many families. This treatment is often recommended for children with severe PANDAS symptoms, especially when other approaches like antibiotics or behavioral therapies haven’t brought relief. In particular, children experiencing severe neuropsychiatric symptoms, such as emotional disturbances, tics, and other behavioral issues, may find an IVIG treatment to be a suitable treatment option.

While it’s important to weigh the potential benefits against the financial, emotional, and physical investment, many parents find solace in knowing they are exploring every option to help their child heal. Choosing an IVIG treatment can feel like a big step, but for families who have seen their child’s symptoms improve, it can also be a life-changing one, offering the promise of restored health and happiness.