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?"

Monday, September 22, 2014

Platelets Taking A Dive-9/22/14

Well its been two weeks since we increased the CellCept, and Jordan's hemoglobin and white blood cells have finally increased (not by much, but no decrease is a good thing in this house). Sadly his platelets are still dropping and he has petachia on his waist and legs. I am keeping fingers crossed that Wednesdays labs will show an increase, even if its by a little margin.

Platelets: 25 (they were at 50 on 9/10/14)
Hemoglobin: 13.2 (they were at 12.2 on 9/10/14)
WBC: 4.2 (they were at 3.9 on 9/10/14)

We typically don't do IVIG unless his platelet count drops 10 or below. So fingers crossed that won't happen. I am going out of town on Sunday for the day/night (taking my daughter to the One Direction concert, and its a 4 hr drive), and I dont want to worry about him or put that full responsibility on Brian with Jordan needing to be hospitalized, and juggling Conner too. So fingers crossed and prayers to the platelet gods that we get an increase this week!
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