IVIG is an intravenous blood product (the immunoglobulin element of donors blood) that is regularly given to children and adults alike who have certain immune deficiencies. It is also used for other kinds of treatment, to clear infection, for encephalitis, and other medical conditions. The Immune Deficiency Organization has written an excellent online booklet explaining the contents, cleaning, and use of IVIG. Excerpts from this handbook can be found on their website.
IVIG is endorsed for PANDAS by a consortium of physicians/researchers. The PANDAS Physicians Network gives recommended dosing. Results of a new study will be published shortly (NIMH-Yale IVIG Study). The PANDAS IVIG study administered 2 grams per 1 kilogram of the child’s body weight administered slowly over a 2 day period. Preliminary results are positive but not conclusive. It is likely debate about the efficacy about the use of IVIG will continue. IVIG is considered off-label for many conditions and debate persists.
The majority of PANDAS children DO NOT need IVIG on a continual basis. REPEATED MONTHLY HIGH DOSE (2gram/1kg) IVIG is not recommended by our Scientific Advisory Board. Occasionally a child is found to be clearly immune deficient (PID or CVID). Consultation with an immunologist is important and IVIG followup may be different.
There is a professional debate about how and when to use IVIG treatment for PANDAS/PANS. This non-profit non-medical professional network advised by our Scientific Advisory Board supports the use of IVIG when clinical presentation of the child is acute and symptoms are supported by laboratory tests.
Extensive efforts have been made to clarify to medical professionals the definition of the “acute clinical presentation” and this is discussed thoroughly in many recent studies and reviews published by the NIMH consortium on PANDAS/PANS. However, specific immune markers have NOT been identified for the disease and the diagnosis of PANDAS/PANS is currently based on the clinical presentation. For a deeper discussion visit also the PANDAS Physicians Network.
The American Academy of Allergy, Asthma and Immunology discusses on page 26 of its 2017 “Work Group Report“ the preliminary findings for the use of IVIG to treat PANDAS and its need for further study by the NIMH. The AAAAI states, “The immune-based therapies should be used only in cases in which it is clear that the neuropsychiatric symptoms are related to an autoimmune response, as supported by laboratory evidence and in conjunction with neuropsychiatric professionals.”
It is a treatment that no parent should rush into. There are some reports on the internet or from some un-informed doctors that IVIG can be dangerous. This is NOT true. Ask the physician directly, generally they are sending a cautionary statement to you because like ANY medical procedure – whether it be immunizations, tonsillectomy, transfusion, etc. – there of course is a measure of medical expertise that must always be involved. IVIG, if administered, would only be done in an outpatient IVIG center, surgical center or medical hospital.
WHY DOES IVIG WORK?
Immunology is a relatively new field of medicine and it is extremely complex. The exact mechanisms of IVIG are not thoroughly understood.
IVIG has been shown to be helpful with the harmful inflammation caused by autoimmune illnesses but the exact causative actions are not clear yet. Donor antibodies may “retrain” the abnormal antibodies in the patient or the large amounts administered may simply overwhelm the harmful antibodies – thereby removing them from the PANDAS patient. Suffice to say: researchers have found many beneficial mechanisms in IVIG but still debate the specific mechanisms.
It is used in many illnesses in different dosing and various purposes. There are extensive discussion throughout medical literature. Briefly, IVIG can be used in many different ways: clear acute infection, improve immune deficiency, arrest or heal the attack of encephalitis. New research being published by the consortium indicate that PANDAS-PANS may be at times due to autoimmune deficiency and at other times due to autoimmune-encephalitic reaction. This is still debated and the use of IVIG is done on a case by case basis at this time. Seeing an expert experienced in diagnosing PANDAS-PANS is paramount in importance.
The concept of IVIG can be scary and intimidating. Educating a family of the process will help ease fears. So, what happens when a child receives IVIG? A very tiny intravenous drip is given in the child’s arm or hand over a period of 4 to 6 hours. Usually over a two day period. The child can eat or drink as normal. It is very simple and a doctor or nurse is always nearby. On the second day in the evening the child may have a headache or vomiting for 4 to 6 hours and then it will end and the child can go about their daily activities.
Some parents have felt that they re-exposed their children too quickly to other children, particularly in the Winter months when strep is frequent. If possible, keep the child home for at least a week or two if not more. Be vigilant with your child’s school and playmates about strep cases – ask to be informed – explain your child is sensitive to strep.
For the typical PANDAS case – there will be gradual improvement of the child’s symptoms over a 3 to 4 month period. Some of the more severe PANDAS cases – take up to one year. The healing process is very complex and have highs and lows of symptoms. Please talk with other parents in this network to have a better understanding the process which requires both patience and courage to go through.
Doctors involved with PANDAS are trying very hard to get this procedure covered by insurance. Occasionally it is covered – but usually it is not. The cost depends on your child’s body weight.
NIMH IVIG STUDY
New IVIG study shows 60% mean reduction in symptoms for PANDAS patients.
A new paper (Oct 2016) submitted to the Journal of the American Academy of Child & Adolescent Psychiatry describes the outcome of the NIMH double-blind placebo controlled study of IVIG for treatment of symptoms in children who met the criteria of PANDAS. Read more about it on the Pandas Physicians Network.