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?"

Saturday, January 11, 2014

Saturday Update-1/11/14

Dr Gold was concerned about the ulcers in Jordan's mouth, so he wanted us to go do a throat culture to make sure it wasn't anything other than ulcers. While at the doctor's, we went ahead and did some blood work.

Everything looks good blood work wise, and everything is up compared with the Monday and Thursday blood work.

WBC is 3.1 (4.5-13 is normal) so that is up from the 2.9 from Monday.
RBC is 3.5 (4.5-5.3 is normal), so that is slightly down from the 3.7 from Monday.
HGB is 10 (13-16 is normal), so that is up from the 9.6 from Thursday.
Platelets are 210 (150-450 is normal), and that is down from the 211 from Thursday.

Bilirubin level is 1.2 (0.2-1.0 is normal) so that is still slowly dropping (which is good).

Retic count is 1.2 (0.5-1.8 is normal) and that is WAY DOWN from the 8.5 from earlier this month; so very pleased with that.

Neutrophils are 67, which is still in a normal range.

WBC and HGB are still going back and forth from high to a little low; so his levels are still not stabilized yet; but at least they are staying out of the danger zone for now. 

No results on the throat culture yet, hopefully know in a day or two. Appointment with Dr. Gold Monday morning. Did get a script for the "Magic Mouthwash" so that gives him some relief from the ulcers deep down his throat.

Will update again on Monday; continued thoughts and prayers please =)
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