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, March 11, 2014

Quick Weekly Update-3/10/14

Just got his test results in email, everything looks good.

Something new I learned this week about Evans, thanks to the support groups that I am in....

Jordan has been suffering from fatigue the past two weeks and muscle aches, I figured he just wasn't going to sleep when he is suppose to at night (and or not sleeping well), and I took the muscle aches to us weaning him off the steroids (he WAS on a very high dose starting out-120mg a day). Well come to find out fatigue and muscle aches are symptoms of Evans, even when your counts are in normal range. So that has been an adjustment for him (and us). The fatigue is everyday, muscle aches come and go, so its not an everyday thing.

But other than that, he is pushing through it, dealing with it the best way he can at this point. Spirits are high, and he is excited about next week's appointment, because he is going to request to have the PICC removed. I sure hope Dr. Gold gives the okay on that, even if it means we have to come back at the end of the day and do it (we have to do a breathing treatment 2 hrs after our appt with Dr. Gold., and he is also backed up from not doing clinics last month). Not sure how long it takes to remove a PICC, I know the process of it, but apparently its something the nurse can do right there in the room. Keeping fingers and toes crossed! I am truly over it!

Anyway, here are his lab results:

WBC: 4.3 (was 4.8) Still low
RBC: 5.04 (was 4.57) Normal
Hemoglobin: 13.3 (was 12.2) Still low, but he hasn't been this number in months!
Platelets: 216 (was 163) Normal
Neutrophils: 68 (was 73) Normal
Retic Count: 1.0 (was 1.1) Normal
Bilirubin: 0.4 (was 0.3) Normal

Plan of attack is to decrease his steroids again, we were at 66mg a day, and we are now decreasing to 60mg a day. Appointment next week, and will go from there.
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