Today is PANS Awareness Day, and I’m on my way to Austin for a PANS Awareness meet and greet with Texas lawmakers that I just learned about last week through a comment on one of my Facebook posts. Isaac (15) and Gillian (11) have the day off from school, and I’m taking them with me.
I would be honored if you would take a few minutes out of your day to watch the following video, which gives an overview of PANS/PANDAS. Remember, *PANS is not rare, it is rarely diagnosed.*
In Isaac’s case, which is more complex due to his genetic difference, it took seven years to get a proper PANS diagnosis.
Seven. Years.
This is why we need PANS Awareness Day.
In the last three years, Isaac has undergone many of the antimicrobial and immune-modulatory treatments mentioned in the video, including 23 rounds of in-hospital IVIg. The changes we have made in our home environment, daily routines and consumption are too many to name. Isaac has made tremendous improvements, and we are hopeful they will continue. We no longer consider him sick, and yet it is almost impossible to know his baseline and what we can reasonably expect in terms of complete healing and progress. (Not to mention the healing we all need from living this experience.)
We hope sharing our story will help others, because no family should have to suffer through what we have, and no child should have to suffer through what Isaac has.
Thank you all for your love and support.
Gray Colored Glasses 