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 of crying and sadness.
As the monster of catatonia fights to keep it’s grip, the path often becomes rocky.
Some stop peeing.
Some stop being able to process food.
Some stop chewing and swallowing.
The brain is the computer, so to speak, and if it isn’t working properly then other functions don’t work.
Intravenous Immunoglobulin (IVIG) is one of the treatments of choice to deal with the inflammation in Osiyyah’s brain. What damage has been done, what can be corrected, what can be restored – all are unknowns to us. He had his first treatment of IVIG on March 3rd to March 6th. I will attempt to give a write up about those days in the next day or 2.
The Lorazepam drug he is on is what is used to help “turn down” the catatonia but it is an extremely difficult beast to maintain and it continues to fight back. Some believe catatonia functions as the brain’s protective mechanism when its signals misfire. It may also serve as the foundation for certain episodes of psychosis. I will be discussing higher doses of this with his doctor hopefully tomorrow.