If your child is living with PANS/PANDAS, IVIG can be an effective treatment option, especially in severe cases.
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For some families, however, the cost of IVIG treatment can be an issue. For others, the lack of access to IVIG can make things difficult as well.
In this article, you will get the latest information about when to consider IVIG for PANS/PANDAS, how much the treatment costs are, the potential risks, and more.
A Quick Overview of PANS/PANDAS
PANS
PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome.
It is a medical condition that causes children to develop abrupt, possibly overnight, obsessive-compulsive disorder (OCD) or eating restrictions. In addition, they may also exhibit symptoms of depression, irritability, anxiety, sleep disturbances, and problems with schoolwork.
The exact cause is unknown. However, it is believed that infections, metabolic disturbances, or immune reactions may trigger PANS.
PANDAS
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
It is a medical condition characterized by sudden OCD or tics (involuntary movements) following a recent streptococcal infection, such as strep throat or scarlet fever. PANDAS patients may also display symptoms of irritability, emotional changes, anxiety, and problems with schoolwork.
PANS/PANDAS is a rare condition. According to a new 2023 study, the estimated annual incidence of this condition is 1 in nearly 12,000 children between 3 and 12 years annually [1].
1. When to Consider IVIG for PANS/PANDAS?
The PANDAS Physicians Network strongly recommends considering IVIG for PANS/PANDAS if the symptoms cause significant problems to your child’s daily functioning.
You should work with your child’s provider and specialists to decide if IVIG is appropriate for your child.
Not all children need IVIG. Experts say that only 10% to 15% of children require IVIG. About 1 in 20 children will require long-term IVIG treatment [2].
2. How Effective Is IVIG for PANS/PANDAS? A Look at the Scientific Evidence
IVIG can be an effective treatment option for children who don’t benefit from antibiotics, behavioral therapy (talk therapy), steroids, and NSAIDs (nonsteroidal anti-inflammatory drugs).
In many cases, a single course of IVIG may reduce symptoms and even reverse PANDAS [3].
Several studies suggest that IVIG for PANS/PANDAS can dramatically improve symptoms.
For example, in a 2021 study, researchers administered IVIG (Octagam 5%) infusions every 3 weeks for a total of 6 infusions over a period of 18 weeks to 21 participants between 4 and 16 years [4].
At the end of the study, they found that all the participants experienced over 50% improvement in their symptoms for at least 8 weeks following treatment and a subset of those patients experienced improvement up to 46 weeks following treatment.
Swedish researchers observed similar results in a 2022 trial. In this trial, 10 children (median age 10 years) received IVIG 2 g/kg monthly for 3 months. 9 children had at least 30% improvement in their symptoms [5].
Most members of the PANS Research Consortium (PRC) prefer IVIG to oral or intravenous steroids for moderate-to-severe PANS [6].
In conclusion, research for the use of IVIG for PANS/PANDAS is ongoing. Available evidence shows promising results, and IVIG is worth a try.
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About Copay Assistance3. What Are the Potential Risks of Using IVIG for PANS/PANDAS?
Headache, nausea, vomiting, and fever are the common side effects. In rare cases, IVIG may cause:
- Potentially life-threatening allergic reactions
- Anemia
- Aseptic meningitis-like illness
4. Is IVIG for PANS/PANDAS FDA-Approved?
No treatments, including IVIG, are FDA-approved for PANS/PANDAS.
However, doctors may prescribe specific medications based on their clinical experience and available data. Such practice is known as off-label use.
5. What Is the Cost of IVIG for PANS/PANDAS?
Cost varies considerably depending on dose and weight. It can be as high as $25,000 [7]. Because the FDA has yet to approve IVIG for PANS/PANDAS, Medicaid doesn’t cover IVIG [8].
Contact your insurance provider for questions related to coverage for IVIG for PANS/PANDAS. IVIG treatment may require prior authorization from your insurance company prior to administration.
REFERENCES:
- Wald, Ellen R et al. “Estimate of the incidence of PANDAS and PANS in 3 primary care populations.” Frontiers in pediatrics vol. 11 1170379. 21 Sep. 2023, doi:10.3389/fped.2023.1170379
- “Oregon Health Authority Quality and Health Outcomes Committee AGENDA.” Oregon.gov, www.oregon.gov/oha/HPA/DSI/QHOCMeetingDocuments/2022-06-QHOC%20Materials%20Packet.pdf.
- “MEMORANDUM.” www.kslegislature.org, Nov. 2021, www.kslegislature.org/li_2022/b2021_22/committees/ctte_s_fin_inst_ins_1/documents/testimony/20220310_24.pdf.
- Melamed, Isaac et al. “Evaluation of Intravenous Immunoglobulin in Pediatric Acute-Onset Neuropsychiatric Syndrome.” Journal of child and adolescent psychopharmacology vol. 31,2 (2021): 118-128. doi:10.1089/cap.2020.0100
- Hajjari, Parisa et al. “Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and intravenous immunoglobulin (IVIG): comprehensive open-label trial in ten children.” BMC psychiatry vol. 22,1 535. 6 Aug. 2022, doi:10.1186/s12888-022-04181-x
- Melamed, Isaac et al. “Evaluation of Intravenous Immunoglobulin in Pediatric Acute-Onset Neuropsychiatric Syndrome.” Journal of child and adolescent psychopharmacology vol. 31,2 (2021): 118-128. doi:10.1089/cap.2020.0100
- Kaitlyn Budion State House News Service, Fall River Herald News. “High Cost of Treating PANDAS Disorder Leaves Families in Bind.” The Herald News, 15 July 2019, www.heraldnews.com/story/news/2019/07/15/high-cost-treating-pandas-disorder/4691123007.
- “Health Insurance – Pediatric Autoimmune Neuropsychiatric Disorders – Modification of Coverage Requirements.” https://mgaleg.maryland.gov/mgawebsite, mgaleg.maryland.gov/2022RS/fnotes/bil_0000/hb0820.pdf.
