Although this is a blog about Periodic Paralysis, I have decided today to post an article I wrote about Sotos Syndrome. My family not only deals with Periodic Paralysis but I had a daughter born with another very rare genetic disorder called Sotos Syndrome. Trying to find a diagnosis and proper treatment and answers for an unknown illness were not new to me when my journey with the devastating effects of the Periodic Paralysis began for me.
What I do today with my website, blog, support groups, book and advocacy and more, is rather a continuation of my work battling the medical professionals and the injustices being dealt by their hands; the hands of those who take a vow to "do no harm" that started over forty years ago. You see my daughter died needlessly, tragically and painfully due to the negligence of medical professionals in an emergency room, when they told me to take her home. They said she had the "flu" and she must "suffer" at home like everyone else. She died about five hours later at home from "overwhelming sepsis." (poisoning throughout her blood system which showed up in the blood work) I often wonder if she had Periodic Paralysis also which led to the sepsis which is connected to metabolic acidosis, a problem for many of us with Periodic Paralysis.
We with Periodic Paralysis can relate to this kind of treatment and neglect at the hands of the medical professionals who treat us.
Sotos Syndrome was described first in 1964 in the New England Journal of Medicine and in 1994, there were fewer than 200 known cases worldwide. Today, about one in fourteen thousand children are born with Sotos Syndrome. This condition is not life threatening; individuals with it may live a normal life span. There is no established method of treatment. It is based on the symptoms that occur.