Drs. Perlmutter and Swedo used in the 1999, Lancet, Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood, where clearly all of the children benefitted from its use. The sampling was small (30 of children).
In PANDAS, an autoimmune irregularity is causing encephalitic-like inflammation. Why did Swedo choose IVIG? Because IVIG is used for: Autoimmune and Encephalitic illnesses at doses that far exceed Swedo’s modest dose of 1 gram per 1 kilogram of child’s body weight.
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. Some PANDAS children do quite well on intermittent use of antibiotics or daily prophylactic antibiotics and certainly after several months to one year a parent will know if their child fits into this category. See the PROGNOSIS section for the varying ways our group of 70 children presents with this illness.
There are some reports on the internet or from some uninformed 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.
The cautionary element is that most doctors know very little about PANDAS, so they must say this so that you the parent become fully informed on your own.
It 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. The Immune Deficiency Organization has written an excellent online booklet explaining the contents, cleaning, and use of IVIG.
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. It is helpful to understand a little about the Immune System.
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.
One study indicates that IVIG has also been shown to have a direct effect on the proliferation of natural regulatory T cells (Tregs). Kessel, et al (2007), Journal of Immunology , Intravenous Immunoglobulin Therapy Affects T Regulatory Cells by Increasing Their Suppressive Function.
The process: The dose that Dr. Miroslav Kovacevic has found to be most beneficial for PANDAS is 1.5 Gram/1kilogram. 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.
Parent Recommendation: 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.
How long does it take to Heal?
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 is approximately $1,000 for every 10 pounds of your child’s body weight. We will update this area as we learn about any Insurance Companies that will cover this procedure.