Estimated reading time: 7 minutes
Is your child struggling with sudden, overwhelming symptoms that seem impossible to control?
For families dealing with PANDAS, intravenous immunoglobulin (IVIG) treatment offers a beacon of hope, helping to reset the immune system and bring much-needed relief.
What is PANDAS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is a sneaky subtype of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) involving a sudden onset of OCD or even tics after a strep infection.
One moment your child is giggling through bedtime stories—and the next, they’re frozen on the couch, too terrified by their own thoughts to move.
Basically, what’s happening is this: their immune system mistakenly attacks their brain. It’s like flipping a switch no one gave you instructions for. And once flipped, everything changes.
Kids with PANDAS often show up with:
- Sudden behavioral changes
- Emotional outbursts and mood swings
- Severe separation anxiety
- Sleep problems
- Skill regression
Ready to improve your child’s brain health? Let’s ditch the guesswork and take action.
What is IVIG Treatment for PANDAS?
When first-line treatments like antibiotics, cognitive-behavioral therapy (CBT), and anti-inflammatory medications fail, families often turn to IVIG (intravenous immunoglobulin) therapy. This treatment involves infusions of purified antibodies directly into the bloodstream to calm an immune system that’s gone haywire.
Emily’s Story
Emily was your typical 8-year-old who loves soccer games, weekend playdates, and all the fun that comes with childhood. But then everything shifted.
A strep infection and a tick bite—nothing too alarming, or so they thought. Suddenly, stepping onto the field felt impossible.
Fear gripped her. Every move, every play, was overshadowed by a constant worry of getting hurt.
Her parents, desperate for answers, tried it all. Antibiotics, therapy, anti-inflammatories—you name it. Nothing brought their vibrant daughter back.
They felt like they were stuck in a never-ending loop, watching her drift further away. Only when they turned to IVIG did things start to change.
Slowly but surely, Emily began to emerge from the fog. Her spark came back—soccer, laughter, playdates, it all started to return.
Parents face this sudden shift every day. One moment, your child’s laughing and thriving. Next, they’re stuck in behaviors and fears that seem to appear out of nowhere.
Traditional treatments don’t work. And that’s where new options, like IVIG, can make a world of difference.
How Does IVIG Work?
- Immune System Reset: Helps in easing inflammation and calming those overactive immune responses.
- Symptom Reduction: Many families notice their kids’ OCD, tics, and emotional regulation start to improve.
- Neurological Support: IVIG can also reduce brain inflammation, which plays a big role in PANDAS symptoms.
How Does Intravenous Immunoglobulin Work for PANS/PANDAS?
IVIG targets autoantibodies and modulates immune response that causes neuropsychiatric symptoms in PANS/PANDAS. It can reduce critical symptoms such as:
- Obsessions and compulsions
- Mood swings
- Anxiety
A study on 55 children with severe PANS/PANDAS symptoms found that IVIG treatment (2 g/kg per day for two consecutive days) led to significant symptom improvement or complete remission in 85% of cases. Some children needed a second dose for lasting improvement (Pavone et al., 2020).
Working with an immunologist throughout the treatment process is crucial, as they play a key role in managing PANS and PANDAS (Bellanti, 2023).
How is IVIG Infusion Administered?
IVIG infusion delivers antibodies directly into the bloodstream via IV, helping balance the immune response and reduce inflammation in conditions like PANS/PANDAS.
1. Preparing for IVIG
Before starting IVIG, your child may need blood work, vital sign checks, and a medical history review to ensure readiness.
2. IVIG Infusion Process
IVIG is slowly given through a vein over several hours, with most kids with PANS or PANDAS doing multiple IVIG treatments, needing 6 to 12 monthly treatments—some require more.
3. Monitoring IVIG Side Effects
Vital signs will be closely monitored during the infusion to keep your child safe and spot any side effects early.
4. Tracking Progress
Your child’s response will be monitored over time, and the treatment plan may shift based on symptoms.
What Should We Expect With IVIG Treatment?
IVIG can sound overwhelming at first—but for many families, it becomes a hopeful and empowering step forward in their child’s healing journey.Some kids respond within days, while others take longer—and that’s okay. Healing isn’t linear, and every child’s path looks a little different.
There’s no one-size-fits-all answer, just steady, supported steps that, over time, help bring kids back to themselves.
What are the Potential Benefits?
- Reduction in OCD symptoms and anxiety.
- Improved focus, behavior, and emotional stability
- Enhanced quality of life for child and family
- Effective for moderate to severe PANDAS symptoms
What are the Potential Side Effects and Risks?
IVIG can be highly effective for managing PANDAS/PANS, but like any treatment, it comes with potential risks. It’s important for parents to discuss these with their healthcare provider to make an informed decision.
Common Side Effects
Although generally mild, some side effects of IVIG can cause discomfort during or after infusions:
- Headache: Often, it’s because of changes in fluid levels or the rate of the infusion. Hydration really helps here, so make sure your child drinks plenty of water before and after.
- Nausea and Vomiting: Some kids might feel a little off in the stomach during the infusion. Medications or slowing down the infusion rate can usually do the trick.
- Fever and Chills: The body adjusts to the infusion but don’t worry—it’s temporary, and before you know it, your child will be feeling better.
- Fatigue: It’s just part of how the body adjusts. Rest, water, and a little time usually get them back to their usual self.
What About Rare but Serious Risks?
Serious side effects with IVIG are very rare, and infusion centers are well-prepared to handle them if they arise. Still, it’s important to be aware so you know what to watch for:
- Allergic Reactions: In uncommon cases, children may have a strong allergic response during or shortly after an infusion. Staff are trained to watch out for these reactions and provide immediate treatment.
- Blood Clots: IVIG may slightly raise the risk of clotting, especially in those with underlying conditions. If your child’s limbs swell or hurt, reach out to your provider
- Hemolytic Reaction: this rare response affects red blood cells. Signs like dark urine, jaundice, or unusual tiredness should be discussed with your doctor.
What Does Research Say About IVIG?
A study published in Frontiers in Neurology explored clinical features and treatment approaches in Italian children diagnosed with PANDAS/PANS. It offered key insights into the sudden onset of OCD and tic disorders tied to these conditions, highlighting the critical need for early diagnosis and personalized 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:
- IVIG can reduce symptom severity
- Improves daily functioning, according to studies and anecdotal reports
Limitations:
- Ongoing research to establish long-term efficacy and safety for PANDAS patients
- Clinical trials highlight the importance of consistent antibiotic use before and during trials to ensure valid results
Future Directions:
- Growing understanding of autoimmune neuropsychiatric conditions
- Continued evolution of IVIG’s role as a treatment option
Is IVIG Right for Your Child?
Choosing IVIG for your child is truly a big decision and often one of the last options when everything else hasn’t worked. Many families find hope in the potential it offers, especially when PANDAS symptoms become too overwhelming.
While it involves financial, emotional, and physical considerations, many parents find peace in exploring every option for healing. IVIG can be life-changing for children with overwhelming neuropsychiatric symptoms like emotional disturbances and tics.
For those who experience improvement, IVIG offers a renewed sense of well-being. It becomes a critical step toward better health and happiness when other treatments have not worked.
What are Other Natural Treatments for PANS/PANDAS?
1. Nutritional Support
Incorporate anti-inflammatory foods (like omega-3-rich fish, leafy greens, and healthy fats).
2. Gut Health Optimization
Use probiotics and prebiotics supporting immune function and reducing inflammation.
3. Magnesium Supplementation
Aid in muscle relaxation and stress relief, potentially easing anxiety and other PANS/PANDAS symptoms.
4. Herbal Remedies
Turmeric and ashwagandha can help manage stress and inflammation.
5. Mind-Body Therapies
Mindfulness meditation and yoga may reduce anxiety and improve emotional regulation.
6. Environmental Modifications
Lower toxin and allergen exposure at home to minimize symptom triggers.
7. Professional Guidance
Collaborate with a qualified provider—ideally through the BrainBehaviorReset™ Program—for a personalized plan.
Parent Action Steps
FAQs
What is Intravenous Immunoglobulin used for?
IVIG, or Intravenous Immunoglobulin, is used to treat immune system problems like primary immunodeficiencies, autoimmune conditions, and neuroimmune disorders such as PANS and PANDAS. It delivers concentrated antibodies through an IV to help regulate and calm an overactive immune response.
Can IVIG lead to symptom remission?
Yes, especially in more severe cases. Many kids show significant improvement—sometimes full remission—because IVIG helps reduce inflammation and rebalance the immune system.
Are there studies that support IVIG’s effectiveness?
Yes. Open-label trials, placebo-controlled studies, and clinical research show symptom reduction after IVIG in children with PANDAS. Some studies even confirm full remission as a possible outcome.
What is the clinical experience with IVIG treatment for PANDAS?
Clinicians have seen powerful results—less anxiety, fewer tics, and big improvements in behavior and functioning. Side effects can happen, like fatigue or headaches, but careful monitoring makes it safer.
Does insurance cover IVIG for treating PANDAS?
Sometimes, but not always. Parents often need to advocate by gathering medical records and showing treatment necessity to improve approval odds.
Citations
Bellanti, J. A. (2023). The PANDAS/PANS disorders. Is it time for more allergist-immunologists to get involved? Allergy and Asthma Proceedings, 44(5), 296–305. https://doi.org/10.2500/aap.2023.44.230029
Pavone, P., Falsaperla, R., Cacciaguerra, G., Sapuppo, A., Chiaramonte, R., Lubrano, R., Messina, G., Sciuto, S., Sabino, L., Cocuzza, S., Maniaci, A., Fontana, A., Marino, L., Oliva, C., Pappalardo, M. G., & Vecchio, M. (2020). PANS/PANDAS: Clinical Experience in IVIG Treatment and State of the Art in Rehabilitation Approaches. NeuroSci, 1(2), 75–84. https://doi.org/10.3390/neurosci1020007
Réa, D., Mauro, M. J., Boquimpani, C., Minami, Y., Lomaia, E., Voloshin, S., Turkina, A., Kim, D. W., Apperley, J. F., Abdo, A., Fogliatto, L. M., Kim, D. D. H., le Coutre, P., Saussele, S., Annunziata, M., Hughes, T. P., Chaudhri, N., Sasaki, K., Chee, L., García-Gutiérrez, V., … Hochhaus, A. (2021). A phase 3, open-label, randomized study of asciminib, a STAMP inhibitor, vs bosutinib in CML after 2 or more prior TKIs. Blood, 138(21), 2031–2041. https://doi.org/10.1182/blood.2020009984
Dr. Roseann is a mental health expert in PANS/PANDAS who frequently is in the media:
- Healthy Parenting Connector (Video) Why “My Kid is Acting Crazy” Might be PANS/PANDAS
- Living with Lyme (Podcast) Neurofeedback and biofeedback for PANS/PANDA
Always remember… “Calm Brain, Happy Family™”
Disclaimer: This article is not intended to give health advice and it is recommended to consult with a physician before beginning any new wellness regime. *The effectiveness of diagnosis and treatment vary by patient and condition. Dr. Roseann Capanna-Hodge, LLC does not guarantee certain results.
Are you looking for SOLUTIONS for your struggling child or teen?
Dr. Roseann and her team are all about science-backed solutions, so you are in the right place!
Understand PANS/ PANDAS, Autoimmune Encephalopathy, and How they are Diagnosed
© Roseann-Capanna-Hodge, LLC 2024
