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, August 6, 2014

Slowly Coming out of Remission-8/6/14

Chapel Hill just called me, and Jordan is slowly coming out of remission after 3 months of being in the clear. His counts are slowly dropping again, and the doctor feels we are going back into a flare up. So he is being put back on steroids (we have only been on CellCept the past two months).

His hemoglobin isn't dangerously low, but its been at 14 all summer and its now down to 12.7. Platelets have been holding strong around the 136 mark, and they are now at 43 (last week they were at 39). They also said his WBC is starting to drop (but nothing dangerously low) YET. So the doctor feels its best we put Jordan back on steroids and try to nip this in the bud before we have a repeat of this past December.

We will repeat labs next Tuesday, hopefully the steroids are doing something for him, and then the following week we see Dr. Gold.

Will update next week, please keep your thoughts and prayers for Jordan. <3
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