When considering IVIG, it is important to understand that for PANDAS/PANS, there is a very specific protocol to follow when doctors administer the IVIG. While IVIG is beneficial for many things, for PANDAS/PANS, if it is not administered in this certain way, it can actually make things worse. IVIG worked so well* for our child all three times he has needed it (*although slow, you have to be patient as it can takes 4-14 weeks for it to have it’s full affect), because we stuck to this protocol and didn’t allow doctors to talk us out of it for any reason.
If this is a treatment option you find yourself considering for your child, you need to know that it needs to be administered with the specific PANDAS protocol (over a 2- consecutive-day period) to be effective at treating PANDAS symptoms. Administering it otherwise (say part of the dose one day and going back a week later for the remainder of the dose) can, and often has made things worse for many PANDAS kiddos. Doing it that way essentially stirs things up–the opposite of what an overactive immune system needs or can handle. Giving a 2 consecutive day HIGH DOSE (versus lots of low dose) floods the system with healthy antibodies, essentially telling the child’s mutated/hyperactive antibodies they are “fired” and no longer needed or welcome, getting them out of there. 2 consecutive-day High Dose. Fight for it. Your doctor may simply not realize, as IVIG is beneficial for several things, not just PANDAS, and often it’s fine to administer it in partial doses. NOT for PANDAS. Google it. There are studies to back you up. Take screen shots of articles and keep these and all pics and videos of your child in a PANDAS flare in a separate folder on your phone, so you can pull these up quickly and show the doctors you are not a frantic/irrational mom, but rather a level-headed person whose done your research and are there to ensure your child receives the best and most ideal care. They will eventually stand down. You must also pay attention to the dosage. The PANDAS protocol calls for 2grams of IVIG per kg of your child’s weight. They’ll take your child’s weight when you get admitted to hospital or visit a doctor. Document this. You can use google to convert pounds to kg. Whatever your child’s kg weight is, they should receive double that in grams of IVIG. I mention all this to arm you with this info and remind you to NOT assume the doctors and nurses administering the IVIG will know. For example, for our son’s second flare, they wanted us to split the 2 IVIG doses into 2 weeks–I REFUSED, stating article after article that shows this is not only not effective but could cause more harm than good for the child with PANDAS. For our most recent flare (Jan 2019), they agreed to the 2 day dose, but their math was wrong and they were not going to give him enough grams. Again, I pulled up reports and also pictures of his previous IVIG bags showing the grams he received in the past compared to the weight he was at the time (which I was able to prove by simply looking at his patient portal records from his pediatrician’s website). Take pictures of these bags! At one point they told me a bag won’t hold more than 40 grams and I immediately pulled up a picture where his previous bag held 42 grams, labeled right there on the bag. Guess what–they brought us a 44 gram bag after that (which is what he needed this time–first day 40 grams, second day 44 grams to equal the 84 grams his current weight required). **Important note: If your child tests positive for LYME, do your own research regarding IVIG, as in some cases (I am not versed in Lyme) IVIG can be contraindicated for a child also dealing with Lyme. Meaning, for that particular case, IVIG is NOT helpful! There are facebook groups out there that specialize in PANDAS children also dealing with Lyme. Start there for info/support.
Example:
Child weighs 82 pounds.
Convert this to kilograms: 82 pounds = 37.19 (we’ll say 37) kilograms.
Child should get double this in grams of IVIG. 37×2= 74 grams of IVIG
This 74 grams should be administered across 2 days. Meaning approximately 37 per day. (They may do a little less first day to watch for reactions, then a bit more to finish out second day).
This dose is referred to as 2 grams per kilogram of child’s weight over a 2 day dose.
Another way a doctor can say this is: 1 gram per kilogram per day. That is the same, because instead of doubling it and then saying they will spread that amount over 2 days, they are saying they will give 1 gram per kilogram each day for 2 days. In the example above, they would give 1 gram of IVIG per 37 kilograms of child’s weight EACH day:
Day 1: 37 grams
Day 2: 37 grams
Total: 74 grams
Simple: Convert pounds to kilograms on google. Double that kilogram number. That is how many grams of IVIG you want in your child before they leave on Day 2.