He was officially diagnosed in 2006 with ITP when he was just 6 years old, after almost 2 years of showing symptoms of what we now know, were low platelets. In December of 2013 his diagnosis was changed to Evans Syndrome, after almost losing his life, and battling a month in the hospital.

In "English Terms" with ES, this basically means his immune system will kill off his red blood cells, white blood cells, and/or platelets. Sometimes it can be all three at one time, or just two, or one.

In October 2014 he was also diagnosed with an underlying immune deficiency called CVID. Which means its a disorder that impairs the immune system and you have low IG levels. People with CVID are highly susceptible to infections such as pneumonia and other illnesses.

There is no known reasoning at this time to why either of these occur and their is also no cure at this moment; we treat with medication, blood transfusions, and infusions when his blood counts are low.

Only 1 in every million people in the world will be affected with Evans Syndrome; and only 1 in 25,000 are affected with CVID, my child is one of them and this is our journey.

For a more detailed and in "English terms" wording, please refer to this post "What is Evans Syndrome?"

Wednesday, September 24, 2014

Count of 8,000-9/24/14

We had labs drawn today, and the doctor on call in Chapel Hill called me tonight. Jordan's platelet count is at 8, which is a drop from 25 from last week. She said because he doesn't have any active bleeding, its not an emergency to take him to the hospital for treatment tonight, just to sit tight until Dr. Gold or Diana call me in the morning with what they want us to do. I am about 99% sure we are heading to the hospital for IVIG in the morning, and will be there for the next couple of days. *SIGH*

I am going to keep him home tomorrow, 1)because his platelets are that low and 2)because of the risk of heading to the hospital in the morning, no sense of taking him to school to be checked out an hour or two later.

Bad timing, since I am going out of town on Sunday. Right now, my fingers are crossed his other blood counts are decent, and that we can do IVIG here in town, instead of traveling to Chapel Hill.

Will update when I know more...prayers & thoughts....
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