IVIG for PANDAS: Costs, What to Expect, Side Effects & More

It can be scary when your child’s behavior changes drastically overnight. PANDAS is a frightening and pervasive disorder, but Intravenous immunoglobulin (IVIG) may be a real solution.

I’m a doctor (and so is my wife), so we were somewhat familiar with this treatment and disease even before seeing it firsthand. However, nothing drove it home quite like watching our daughter suffer from this debilitating condition — and, subsequently, treated with IVIG.

Intravenous immunoglobulin (IVIG) is one of the most effective, but also most expensive, treatment options for a child with PANDAS.

PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.” This occurs when a group A strep infection uses molecular mimicry to trick your immune system into attacking your own brain.¹

PANDAS is a form of sudden-onset pediatric obsessive-compulsive disorder (OCD) and related symptom exacerbations, such as emotional lability or bedwetting (AKA nocturnal enuresis).²

On a side note, PANS refers to “Pediatric Acute-Onset Neuropsychiatric Syndrome,” which exhibits the same OCD symptoms as PANDAS, but does not originate from a group A strep infection.³

IVIG can effectively treat both PANDAS and PANS.

Children aged 3 to 13 are the groups mainly affected by PANDAS, the most vulnerable age being eight years old. Boys are also twice as likely as girls to develop PANDAS. The PANDAS Network estimates 1 in 200 children may have PANDAS.⁴

For many families, IVIG is the right choice. Especially useful in more severe cases of PANDAS, IVIG can give children and parents the peace of mind they finally deserve.

What Is IVIG?

Intravenous immunoglobulin, also known as IVIG, refers to the administration of immunoglobulins directly into a vein — typically immunoglobulin G (IgG).

IVIG’s specific mechanism of action is unknown, but it has been able to “reset” the immune system in many studies concerning autoimmune disorders.

The IVIG is made from thousands of human donors. There are some risks involved with using immunoglobulin from many human donors:

• Hidden infections
• One batch could contain stronger immunoglobulins than another batch
• 10 to 15% failure rate is expected

In short, it’s an immunomodulatory therapy useful in the treatment of PANDAS and other immune system disorders.

How IVIG Treats PANDAS

It is believed that the immunoglobulins (antibodies) in IVIG interact with your immune cells to “reset” your immune system. This seems to be an effective treatment against autoimmunity.

How does IVIG work? How IVIG treats PANDAS is not fully known. Still, the FDA has approved IVIG treatment for many immune system disorders.

Symptom relief is typically step-by-step. A PANDAS patient could see a reduction of symptoms in a few hours to days. At times, a single treatment may resolve the condition permanently.

Very rarely, a child will go into remission as quickly as the original sudden onset of PANDAS came on. However, it is usually a gradual recovery over the course of several weeks. At times, children may need repeat IVIG infusions.

The Research Behind IVIG For PANDAS

PANDAS was first identified in the 1990s by Dr. Susan Swedo and colleagues at the National Institute of Mental Health.

Soon after PANDAS was identified, IVIG was studied as a potential treatment option.⁵ Since then, IVIG has been rated one of the most successful treatments by PANDAS patients.⁶

Recent case reports indicate IVIG may be more effective than antibiotics and steroids at treating PANDAS.⁷ However, a portion of PANDAS patients did have to undergo a second dose of IVIG.

Several case series into IVIG have confirmed IVIG’s efficacy one year following treatment. A 2018 longitudinal study had a follow-up time of up to 4.8 years, and 88% did not experience “clinically significant obsessive-compulsive symptoms” within the follow-up time.⁸

Can PANDAS Disease Be Cured?

PANDAS can be treated with several treatments, such as plasmapheresis (therapeutic plasma exchange). IVIG is just one of the most effective methods of curing PANDAS.

For many patients, one course of IVIG is enough to reduce symptoms and even reverse PANDAS.

IVIG Treatment: What to Expect

Intravenous immunoglobulin therapy can be a little scary. But here’s what any parent and child can expect:

The Step-By-Step IVIG Process

1. Lab tests evaluate immunoglobulin levels.
2. A topical anesthetic will minimize discomfort where the intravenous catheter is inserted.
3. The child will be premedicated with acetaminophen (to reduce headache and/or swelling) and diphenhydramine (to prevent allergic reactions).⁹ The dosage depends on his/her weight. Intravenous steroids are also used.
4. A nurse will record vital signs, verify emergency readiness, and inform the physician of monitoring guidelines. For this reason, the FIRST course of IVIG is given in the physician’s office. If any of these symptoms occur, the infusion dosage needs to be decreased right away:
   • Nausea, vomiting
   • Dizziness
   • Headache
   • Palpitations
   • Flushing
   • Itching, rash, hives
   • Joint, back, muscle pain
   • Diaphoresis
   • Temperature change of more than one degree celsius
5. In addition, some of the guidelines call for an immediate halt of procedure for more severe symptoms:
   • Dramatic fall in blood pressure
   • Shortness of breath, respiratory distress
   • Edema of eyelids, tongue, lips
   • Chest tightness, 25% heart rate increase
6. Then, the actual IVIG infusion occurs. Under ideal circumstances, the infusion administrator will start with a small dose, gradually increasing it every 15 or 30 minutes.
7. The nurse will continue to monitor vitals and look for symptoms throughout the infusion.
8. If all goes well, the nurse will wrap the IV catheter until the second half of the infusion, the next day. The child may need to rest for a few minutes before he or she can walk out comfortably.
9. Long-term antibiotic prophylaxis may be recommended to accompany IVIG therapy.

What Does IVIG Do to Your Body?

Introducing new IVIG into your system achieves several benefits:

1. Neutralizes abnormal antibodies
2. Stops your immune system from attacking your own nervous system¹⁰

The second benefit is why IVIG is the treatment of PANDAS. Even though we are not completely sure how IVIG operates, it is well researched and scientists have confirmed its efficacy over time.

Since a group A strep infection (in the case of PANDAS) tricked the child’s own immune system into creating autoantibodies to mess with their brain, IVIG’s ability to “reset” the immune system includes these autoantibodies.

How Much Time Does IVIG Take?

The most common is two days of IVIG treatment. Each of the two days, the child is given between 750 milligrams per kilogram of the child’s body weight in IVIG. (Total dose 1.5g/kg)

A child’s symptoms may start to improve as soon as a day after the IVIG treatment. A three-week turnaround is the average recovery period. Rarely, children may have a delayed response where their symptoms abate up to two months after the IVIG therapy.

Potential Side Effects of IVIG for Pandas

There are potential side effects whenever undergoing an intravenous immunoglobulin infusion.

First, here are common symptoms of IVIG that are unwanted, but do not warrant stopping the IVIG infusion:¹¹

• Mild to severe headaches
• Nausea, vomiting, diarrhea
• Fever
• Dizziness, palpitations
• Fatigue

Then, there are some side effects that demand the immediate cessation of the IVIG:

• Chest pains
• Trouble breathing
• Sudden decrease in blood pressure
• Sudden increase in heart rate

IVIG Risks

Intravenous immunoglobulin therapy is well tolerated, though somewhat invasive. Even though it is an effective treatment of PANDAS, IVIG comes with some risks:

• Severe allergic reactions may occur, which is why diphenhydramine, an antihistamine, and steroids are administered beforehand.
• Very rarely, follow up appointments have revealed that IVIG may trigger hemolysis, which leads to anemia.¹²
• In rare cases, IVIG might cause Stevens-Johnson syndrome.¹³
• The IVIG is made from thousands of human donors. Although small, there is a slight risk of getting a hidden infection from the IVIG (including unknown stealth pathogens). This very slight risk exists any time multiple human donors are involved.

When Are Children Not a Good Fit for IVIG?

Any children with minor cases of PANDAS may benefit from less expensive, less aggressive treatment. IVIG works best with moderate to severe symptoms of PANDAS (or PANS).

Disorders similar to PANDAS need to be ruled out before IVIG is administered, according to the diagnostic criteria for PANDAS:¹⁴

• Sydenham’s chorea, and other tic disorders
• Tourette syndrome
• Rheumatic fever¹⁵
• ADHD

Children with ongoing infections are not good candidates for IVIG. Researchers have reported IVIG treatments have failed more often when a child suffers from a current infection during treatment.

Therefore, children should be treated for any infection (such as the strep throat that could have initiated PANDAS) before seeking IVIG therapy.

To avoid exposure:

• Children and parents must commit to good hygiene practices.
• School nurses may monitor classmates for symptoms of strep infection.
• Families might want to avoid crowded situations, like malls and parks.
• Infected siblings should be quarantined from the child undergoing IVIG treatment.

Cost & Insurance Considerations

Does insurance cover IVIG? Insurance will probably not cover many treatments for PANDAS, including IVIG. Insurance companies either consider PANDAS to be a controversial disease or IVIG to be an experimental treatment.

(In INDIANA, Dr. Scott was instrumental in testifying to the state legislature. As a result, the legislature passed a law requiring insurance companies to cover some treatments for PANDAS — including IVIG)

Good news – The global health community is moving toward universally recognizing PANDAS by January 2022.¹⁶

What is the cost of IVIG? IVIG can cost between $5,000 and $25,000.

Although some insurance plans cover IVIG for other disorders, most insurance companies do not cover IVIG for PANDAS unless in Indiana or Illinois or a few other states.

We are located in Carmel, Indiana. Our own daughter responded best to IVIG when she developed PANS several years ago. We have extensive experience with PANS/PANDAS patients and utilize the unique Fully Functional® model of living.

If your child might have PANS/PANDAS, you can book an appointment by clicking here, or please call us at (317) 989-8463, Monday-Thursday, from 8AM – 5PM Eastern time.

Sources:
1 https://www.cdc.gov/groupastrep/diseases-public/index.html
2 https://www.ncbi.nlm.nih.gov/books/NBK333433/
3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340632/
4 https://www.semanticscholar.org/paper/From-Research-Subgroup-to-Clinical-Syndrome%3A-the-to-Swedo-Leckman/fddbf448ed32d6117e390fe788e40562e8710c54?p2df
5 https://pandasweb.nl/cfsystem/userData/literatuur/1317330723__document__therapeutic-pf-and-ivig-for-ocd-and-tic-disorders-perlmutter-1999.pdf
6 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6786336/
7 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340809/
8 https://pubmed.ncbi.nlm.nih.gov/29119300/
9 https://www.drugs.com/diphenhydramine.html
10 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6314401/
11 https://pubmed.ncbi.nlm.nih.gov/16391392/
12 https://www.britannica.com/science/hemolysis
13 https://rarediseases.info.nih.gov/diseases/7700/stevens-johnson-syndrometoxic-epidermal-necrolysis
14 https://www.longdom.org/open-access/from-research-subgroup-to-clinical-syndrome-modifying-the-pandas-criteria-to-describe-pans-pediatric-acute-onset-neuropsychiatr.pdf
15 https://www.cdc.gov/groupastrep/diseases-public/rheumatic-fever.html
16 https://www.nprillinois.org/post/families-children-pandas-disorder-still-struggling-get-insurance-coverage