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?"

Saturday, August 16, 2014

Weekly Update-8/16/14

His labs this week weren't too bad, everything (other than his platelets) are border-lined low.

Platelets-54 (last week it was 43, normal is 150-450)
Hemoglobin-13 (last week it was 12.7, normal is 14-16)
Neutrophils are 68, which is good, means his body is producing the cells it needs to.

His Bilirubin has risen a little bit, not by much, but I am keeping an eye on his skin and eye color for jaundice. Back in December, it shot up within 2 days, and since this is around the time he flares up anyway, being extra cautious.

We see Dr. Gold (for the first time since May) on Monday, will draw labs again too, but I probably wont hear anything about that from them.

Will update after the appointment....
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