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, January 15, 2014

Quick Update-1/15/14

Doctor just called me from Chapel Hill about Monday's lab work results; everything looks great, and looks to be that his counts have finally stabilized.

Hemoglobin is at 10
Platelets are at 210
WBC is at 3.1

So although the numbers are not in the normal range for a kid his age (minus the platelets), he is holding steady and he is remaining out of the danger zone (still have to be careful around viruses and sicknesses going around, since his WBC is still low). We are going to decrease his steroids a little more (right now he is at 60mg in the morning and 50mg at night); now we are going to do 50mg twice a day, starting tomorrow. Weaning him has to be a slow process, 1)so he doesn't have any reactions 2)got to make sure his counts will continue to be stable as we decrease the steroids slowly. I asked about his CellCept, and they want to keep him on it as we have been (which is 760mg a day).

Also we are now down to once a week labs (we started off 3 times a week, then twice a week); so I am happy about that. He was suppose to get lab work done tomorrow, but they are canceling that, and we will get lab work done on Monday before he goes in to get his inhalation.
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