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?"

Friday, June 13, 2014

June Update-6/13/14

Well, this isn't how I wanted to start off our summer vacation.

We are on day 2 on being in the hospital. Jordan has shingles, so he is being closely monitored in the hospital as he receives treatment for it. Very painful thing to have, but he is hanging in there like a trooper.

Unfortunately, he is missing his 8th grade graduation today, yet another disappointment for him. But, it is the last day of school, so YAY on that! He is officially a high schooler!

Not sure how long we will be here, Dr. Gold doesnt want him discharged until the shingles have dried up and scabbed over. They are starting that process, but not quite there yet. I'm hoping for a Monday discharge, we will see.


Good news though, all his counts are good, hemoglobin is at its highest number in six months, 14!! So we are super excited about that, finally normal range!
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