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, March 3, 2014

Quick Weekly Update-3/3/14

Jordan isn't feeling well today, so he is home from school. Came up to me last night, complaining about a headache, and then this morning he said he just felt icky. Its now afternoon time, and he says he is feeling better, a little achy, but no headache, and he hasn't had a fever yet. Giving him Tylenol (no NSAIDS because of his blood disorder) every 5 hours.

**FLASHBACK** to almost exactly 3 months ago, same type of symptoms before he went into the hospital in respiratory failure two days later. So yeah, anxiety level has been pretty high today, didn't get much sleep last night either.

Luckily today is the day his nurse comes to see him, so I let her know he was home today, and she could come earlier than she normally does (she typically comes around 4PM); she was here by 11AM. Blood Pressure was great, no fever, all signs pointing to okay.

Check my email a little while ago, and got his lab results...as I was reading them and comparing to last week's lab results, his hematologist called me with the results and plan of attack for this week.

Everything looks good, and still stabilized. His platelets have dropped a little bit, but they are still in the normal range, I am hoping they dropped because of this cold he has; have to make sure we stay on top of it, because of the CellCept he is on. Luckily his WBC is in normal range (but barely), so his body can fight this sickness off.

FINALLY got an appt for this month (after two weeks of fighting someone to set it up), so that is in two weeks, and we are keeping our fingers and toes crossed that the PICC line will be removed. We go on vacation in 41 days, so we are very excited about both.

No weaning of steroids this week, everything stays the same. Which I am fine with, I dont want to rush too fast with taking him off.

Here are his test results this week:

WBC: 4.8 (was 4.7) Normal
RBC: 4.5 (was 4.7) Normal
Hemoglobin: 12.2 (was 12.7) Still low
Platelets: 163 (was 206) Normal
Neutrophils: 73 (was 68) A little high, probably due to the steroids he is on-no concern, since it goes back and forth each week
Bilirubin: 0.3 (was 0.4) Normal

Until next week...
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