Here I sit at the OU Infusion Center in Oklahoma City, OK watching as my son, Osiyyah, is hooked up to an IV. We are on day 2 of treatment #4 of IVIG (once a month treatments of Intravenous Immunoglobulin). This unique approach has recently been being used to treat individuals who suffer with Down Syndrome Regression Disorder (DSRD). It is a treatment plan that was initially formulated in 2019 when Dr. Santoro, a neuroimmunologist at Children’s Hospital of Los Angeles, showed evidence that the regression being experienced among some in the Down Syndrome community was not just “what happens” but that there is an actual physical cause to their regression.
As far back as 1946, Dr. Henry Rollin documented patients as having catatonic psychosis. For the next 70 years, there is very little (basically no research) as to why individuals with Down Syndrome go from functioning to serious regression (loss of skills). Over the years patients were misdiagnosed with schizophrenia, early-onset Alzheimer’s disease or, more recently, late-onset autism. Basically, families have been told, “This is just part of Down Syndrome.”
So what is the benefit of IVIG for DSRD? As said above, IVIG stands for Intravenous Immunoglobulin, and it’s a treatment that involves giving someone a blend of antibodies directly into their bloodstream through an IV. It’s an important therapy for conditions like Autoimmune Encephalitis (AE), which is kinda what DSRD has similarities to or it is possibly AE, in some form or another.
What makes IVIG so valuable is the way it helps regulate the immune system. In autoimmune diseases, the immune system can get confused and start attacking the body’s own tissues—in this case, the brain. IVIG steps in to help calm things down by supplying healthy antibodies. These antibodies help stop the immune system from doing damage where it shouldn’t.
In autoimmune encephalitis, the body can make harmful antibodies that mess with how the brain works. IVIG brings in good antibodies that can block or neutralize the bad ones, which gives the brain a chance to heal.
IVIG also helps the brain’s nerves start talking to each other better again. Once the harmful antibodies are under control and the immune system isn’t so overactive, the signals between nerve cells can begin flowing normally. That can lead to improvements in things like mood, memory, and behavior.
On top of that, IVIG helps reduce inflammation in the brain caused by the autoimmune response. By easing that inflammation, it can help lessen symptoms like confusion, irritability, and other cognitive issues.
I watched a movie sometime ago called Brain on Fire and am now reading the book of the same title. It is the true story of Susannah Cahalan, who suffers from a rare form of AE called anti-NMDA receptor encephalitis. It has been a fascinating read to me considering DSRD shares many of the same symptoms.
Here is a quote from Susannah Cahalan about IVIG:
“On April 2, the nurses started my first round of five intravenous immunoglobulin (IVIG) infusions. The clear IV bags hung on a metal pole above my head, their liquid trickling down into my vein. Each of those ordinary-looking bags contained the healthy antibodies of over a thousand blood donors and cost upwards of $20,000 per infusion. One thousand tourniquets, one thousand nurses, one thousand veins, one thousand blood-sugar regulating cookies, all just to help one patient.”