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, January 21, 2014

1/21/14 Weekly Update

Doctor just called me with yesterday's results, everything has increased, which is awesome! Moving in the right direction.

Compared to last week's labwork:

Hemoglobin: 11.4 (was a 10)-Not in the normal range yet, but getting there
Platelets: 229 (was 210)-Normal range
WBC: 4.1 (was 3.1)-Almost in the normal range, but not quite there yet
Bilirubin: 0.8 (was 1.2)-He is officially in normal range

We are decreasing his steroids again, from 100mg a day, to 90mg a day. So thats a big jump, because we were only decreasing by 5mg a week, but this week we are decreasing by 10mg. So hopefully his counts stay stabilized, and we still get good lab work results next week.

Nurse will come draw labs on Monday, next week. We are not scheduled to see the doctor until February 17th, as long as bloodwork stays good each week.

Jordan, himself, is doing very good. Back to his normal teenage self. Looks and feels great. He cannot wait to get rid of that PICC line, so I am hoping when we see the doctor on the 17th of next month, we can talk about removing it. 

I will update again next week.
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