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, December 30, 2013

Monday's Bloodwork Update-12/30/13

Nurse came by today and did Jordan's PICC dressing change and drew some blood work for Dr. Gold. Just got the results in a few min's ago.

Hemoglobin is 10.5 (up from 10.1)-Normal is 13-16
Platelets are 192 (up from 119)-Normal is 145K-450K
WBC is 2.8 (up from 2.3)-Normal is 4.5-13.0
Bilirubin is 1.8 (down from 2.4)-Normal is 0.2-1.0Hematocrit 30.7 (up from 29.8)-Normal is 40-51
His Neutrophils was 62 on Saturday's lab work; unsure what they were today (hoping to get a copy of today's lab work sometime tomorrow to see); but a normal number is between 47-67, so his is right where its suppose to be now.

So looks like we have finally turned that corner, we are due for blood work again on Thursday, and with those results I should get a follow up appt for next week to Chapel; and we will go from there. But in the meantime, continue with the medications that he is on, but I guess since we are missing this week's Vincristine dose (he has had 3 so far this month), I am going to assume Dr Gold is taking him off that (thank god).

Until Thursday..have a Happy New Years!
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