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?"

Tuesday, February 18, 2014

Quick Weekly Update-2/18/14

I haven't heard from the doctor yet, to see if we are decreasing his steroids this week, but got yesterday's test results from Jordan's nurse in email earlier this morning. Everything still looks good, slow and steady his counts are creeping higher.

WBC-5.3 (was 5.9)
RBC-4.6
Hemoglobin-12.5 (was 12.4)
Platelets-226 (was 209)
Neutrophils-74
Retic-1.1
Bilirubin-0.6

We were suppose to have a doctor appointment with his hematologist yesterday, but they called me on Thursday to cancel. Chapel Hill, Raleigh, and that area got hit with some bad weather last week (as we did, we got an ice storm, they got that plus snow). We were disappointed with the cancellation, because we were hoping to have Jordan's PICC line removed, but we understand, and hopefully that appointment will be rescheduled in a couple of weeks.

We did get his Pentamidine treatment yesterday afternoon (he gets this breathing treatment once a month to prevent pneumonia since his immune system is compromised, plus its because of all the treatment he has received, including medication).

I will update this post once I hear from the doctor on what our course of action is for this week as far as decreasing medication and/or just staying on the same course.

Our nightly routine (med wise, is twice a day).



Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)