Questions for your doctor

IVIG is more likely to fail when children have infections at the time of infusion. Early strep exposure is also tied to IVIG failure. Every bottle of immune globulin contains a different composition of antibodies based on the unique antibody production of the donors. Because of this, a 10-15% failure

Many children experience relief within days to weeks of treatment. Many parents and clinicians report a worsening of symptoms immediately following IVIG followed by improvement.

Work with your doctor or infusion clinicians to make sure the location of the infusion will meet your child’s needs. Some children, for instance, will feel more comfortable in a private room. Others may benefit from the normalization that comes from seeing others undergoing similar treatment. Arrange for whatever you

Generally, IVIG given in the home and infusion clinics is far less expensive than at a physician’s office or hospital. While it can be comforting to have direct oversight from your doctor during the infusion, the cost puts this option out of reach for some families. Many doctors order IVIG

If you have a child with PANS who has not been fully worked up for an immunodeficiency, this is an important step. Immunodeficiency is relatively uncommon in the general population but occurs at increased rates in children with PANS. A co-morbid immunodeficiency dramatically improves the chances of IVIG being covered

Some physicians like to do IVIG in their own clinics where they can monitor patients. This can be comforting for parents though it is often more expensive than IVIG done at an infusion clinic or within the home. Additionally, many side effects are delayed and do not take place during

Not all immunoglobulin products are created equally. Some have greater risks of side effects than others. In particular, sucrose suspended IVIG comes with the risk of kidney damage. Children with low IgA are at increased risk of anaphylaxis from IVIG. Therefore, use of an IgA depleted immunoglobulin product is recommended to lower risk. This

Typically, 2 grams/kilogram is considered “high dose” IVIG and is used to treat PANS and PANDAS. Some physicians order 1.5 grams/kilogram which is also considered high dose. Dosing can become tricky for the 5-10% of children with PANS who also have an immunodeficiency and require ongoing treatment with IVIG. If

Aseptic meningitis is one risk of IVIG. Typically it is self-limiting and often resolves with steroids, allowing a patient to avoid lumbar puncture and receive future IVIG treatments. Discussing a plan of action with your doctor before IVIG can prevent panic as well as unnecessary and invasive investigation in the emergency

In general, slower infusions carry less risk of headache, migraine, vomiting, and/or aseptic meningitis post infusion. Many of the top PANS experts infuse across two six-hour days, though some children require even longer infusions across several days to minimize side effects.