While not all children with PANS and PANDAS need IVIG, the path for those who do can be nerve wracking and expensive. I’m a parent and not a medical doctor. This article is not to be construed as medical advice but rather topics to discuss with your doctor to help you prepare for IVIG as well as ideas for how to keep costs in check.
Questions for your doctor
Are there infections we should test for and treat for prior to IVIG?
The answer to this question will be partially dependent upon whether or not your child has a co-morbid immunodeficiency. Generally, children with an immunodeficiency can expect to receive on-going IVIG and there is a strong chance they will not be able to begin to clear infections successfully until they’ve received several infusions. For children who suffer only from PANS/PANDAS, most doctors will attempt to treat infections prior to IVIG to prevent …
PRAI for 100K
1 in 200 children suffer the devastating affects of PANS and PANDAS which are a form of Postinfectious Autoimmune Encephalopathy.
PRAI's Research run/walks aim to raise awareness and much needed research funds. We hope to bring people together to support families suffering from these disorders. Come join us.