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?"

Thursday, December 26, 2013

12/26/13-9:30AM Update

9:30AM-Brian said they were kicking him out of Jordan's room for an hour, they were getting ready to give him a breathing medicine (ventilator) to help prevent pneumonia (because of all these meds he has been on, suppressed immune system, etc). They did do the blood transfusion around 5 or so this morning, that has since finished up; haven't drawn labs yet, but I am assuming they will do that during Jordan's breathing treatment. So hopefully we hear something around noon about those counts; praying and keeping my fingers crossed they are up, so I can have my boys home tonight! I miss them very dearly.
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