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, January 6, 2014

Monday Update-1/6/14

Saturday's Lab-Work showed his counts back on the rise, which was great news!

This is compared to Thursday's Lab Results:
WBC: 2.7 (was 2.4)-Normal is 4.5-13.0
Hemoglobin: 10.4 (was 9.4)-Normal is 13.7-17.5
Hematocrit: 31.1 (was 27.8)-Normal is 40.0-51.0
Platelets: 403 (371)-Normal is 150-450
Neutrophils: 62 (was 55)-Normal is 47-67
Today we headed up to Chapel Hill for a follow up appointment after a week's worth of blood work here at home, and since its been 10 days since he was discharged from the hospital. Did blood work again, and once again his counts continue to rise...

This is compared to Saturday's lab results:
WBC: 2.9 (was 2.7)-Normal is 4.5-13.0
Hemoglobin: 11.6 (was 10.4)-Normal is 13.7-17.5
Hematocrit: 32.4 (was 31.1)-Normal is 40.0-51.0
Platelets: 359 (403)-Normal is 150-450 (They dropped a little, but no concern, because that's high for Jordan)

***Did not get a Neutrophil count this time, not sure why. But his retic count was 8.5 on Saturday, and Dr. Gold said that's perfect because that means his body is producing the cells it needs to.***
Jordan got his last dose of Vincristine (YAY), and Dr. Gold also wants to start weaning him off the Prednisolone; which is going to be a long process. Right now Jordan is on 60mg twice a day, the new dosage is 60mg in the morning and 50mg in the evening. Each week we will decrease by 10mg, as long as his counts are handling it okay. He is still on all the other prescriptions, including CellCept.

Jordan starts back to school tomorrow (everyone went back today, from Christmas break), after being out the entire month of December; but with restrictions and limitations. No PE participation (due to his PICC line) and of course not picking up anything more than 10lbs with his left arm/hand (where the PICC line is located). I am hoping we can have that PICC line removed by the end of the month; we will see what his counts continue to do. I am super nervous about sending him back; kids can be jerks sometimes, and I am just worried someone will hit the PICC line area, not realizing its a serious area. Thankfully the incision is in the inner arm area, so hopefully he will be okay. I will be picking him up from school, in the afternoons for awhile; until his WBC is in the normal range.

No traveling to Chapel Hill next week, they are coming to our local hospital for clinical work, so we get to see them here in town (which is a nice break). Blood work twice a week (Mondays and Thursdays) from our nurse, and continued PICC dressing changes on Mondays (he also had that changed today too). 

Next update later on in the week, after I get Thursday's blood work results. Those that are dealing with the feet of snow and the arctic blast, stay safe and warm! <3
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