INTRAVENOUS IMMUNOGLOBULIN (IVIG)
An IVIG drip.
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.
Medical Coverage
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.
Diana, I just wanted to thank you- as well as the whole PANDAS community here- for the continued encouragement (and for including the section on IVIG/recovery on this site). It can be so tough to figure out what is going on- and what is actually working or affecting PANDAS healing/regression with regard to IVIG and/or other treatments, the changing teen brain and body, changing levels of hormones, etc, not to mention all the other stuff that we don’t even know are somehow “getting into the mix.” My son, now 15, had the IVIG in late July when he was 14. In the last two months, he has unfortunately ramped up on the rages, irritability, and OCD. (He has also been on Augmentin since around March, and last week we took him off Gabapentin, thinking that maybe this medication might have contributed to the high irritability). Anyway, despite the meltdowns, I just wanted to say that if we had to do it over, we would have done the IVIG again. Compared to last year at this time, our son has FAR MORE physical stamina (in comparison with his peers) than he has had since preschool. (This morning, for example, he went to a marathon for charity, where he finished 18th out of 175 runners- 20 min. 20 secs. for a 5K run-. Two years ago (before the PANDAS diagnosis and treatments),he barely even finished the race at all. He was third to the last to come in. (I believe that the elderly ‘runner’ behind him was walking with a cane…) Anyway, he is also doing better in school since the IVIG, and is generally more independent. Lastly, his social awareness and social skills (including expressive and receptive language that’s involved with being social…)are far better than they have EVER been around his peers (again since preschool, when we think he probably came down with this disease). It seems at this point, the tics, physical symptoms, and some cognitive symptoms, like short term memory have vastly improved. But the OCD,impulsiveness,visual memory,sporadic aggression (mostly resultng from high irritability) are still there,as SOME of the sensory overload stuff like reactivity to lights and sounds, especially when he is tired or transitioning). However, at least he’s functional at school and generally doing OK in other environments. Since the IVIG, it’s like Margo Thienemann’s description of OCD, where most of it is “nesting” stuff- surrounding grooming and in our case, family interactions (especially high irritability towards parents) but where it is not so obvious in the community, and this we are grateful for. We are still hoping that the OCD and irritablility will get better as time goes on. We have been very happy with Hill Park Professionals in the North Bay/Petaluma for helping us wade through the meds, tests,supplements and other treatments. Also Larrie Goldsmith in Novato has helped tremendously with cranial sacral stuff that had allowed our son to sleep finally (early on after he was initially diagnosed). Thanks again for all you do Diana!
All the best- Jamie
Jamie, we’re happy that you’re seeing improvements! That’s wonderful! Please keep us up to date on your son’s progress. Those that visit PANDASnetwork.org would love to hear the progress of a teenager. Being that your son’s onset was as early as preschool, going forward, please keep in mind a second IVIG may be needed. The providers at Hill Park Medical Center are great. You’re in good hands.
Just to clarify, the IVIG was about four months ago-