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.
IVIG is used for many autoimmune illnesses. In fact, the American Academy of Allergy and Immunology advocates in “The Work Group Report“ the use of IVIG for PANDAS.
Nonetheless, 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.
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.