In my last post, I mentioned the book by Susannah Cahalan called Brain on Fire. I found an interesting article about another woman named Kassidy Anderson. She was eventually diagnosed with the same problem that Susannah had – anti-NMDA receptor encephalitis, a rare autoimmune disease that attacks the brain. It’s a pretty good read: https://www.uab.edu/news/health-medicine/brain-on-fire-film-helps-patient-receive-diagnosis#:~:text=What%20Vaphiades%20heard%20when%20he,NMDA%20receptors%20in%20the%20brain.
What is IVIG?
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…
My Thoughts on this World Down Syndrome Day 2025
Today is World Down Syndrome Day. It is a global awareness day focused on raising awareness and advocating for the rights and lives of individuals with Down syndrome, with the theme “Improve Our Support Systems”. For those who don’t know, the date, 3/21, symbolizes the triplication of the 21st chromosome, which is what causes Down…
To Do Things or Not To Do Things
My son started regressing about one year ago (maybe a little before if I think about some small things I was seeing but didn’t realize were DSRD related). He was officially diagnosed on February 7th of this year. Dr. Anadani (his neuroimmunologist at OU Medical in Oklahoma City) sent me this on that day: “I…
Some Thoughts About DSRD
What are we dealing with exactly with Down Syndrome Regression Disorder (DSRD)? It is still a very unmapped diagnosis but we are on the cutting edge again with Osiyyah. Some with DSRD sit and stare.Some wander aimlessly.Some get stuck in a routine.Some lose the ability to talk.Some become very agitated and angry.Some have extreme episodes…
What is Down Syndrome Regression Disorder?
Due to our recent life change with my 20-year-old son (Osiyyah) who has recently been diagnosed with Down Syndrome Regression Disorder (DSRD), I felt motivated to publish a short YouTube video explaining what DSRD is. Here is the link to that video – https://youtu.be/36T4rz44pU8 . Watch it in full below:
An Introduction
Welcome to our little public journal – a place where my mom, Kim Fish, and I will share the research we find and links as a community resource for a journey we never expected to find ourselves on. Please read to the end, as this summary ended up longer than I intended. But, how do…