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?"

Thursday, September 25, 2014

Bubble Boy-9/25/14

Talked to Diana this morning, had a lot of new information to say.

First off, no hospitalization, unless he starts bleeding or has excessive unexplained bruises. The immunology clinic in Chapel Hill wants to see him next week, and they don't want the IVIG to offset any testing they need to do, for correct results. So as long as he remains asymptomatic (aside from the petechia), he becomes bubble boy at home, until his counts go up.

Which shall be fun with the school system on getting these absences excused now that he is in high school. I forgot to ask Diana to fax a note saying he is under a doctors care until further notice, so I will take care of that later on today or tomorrow. Also have to see about getting Brittany to go to his classes sometime next week, and get any work he needs to do. Luckily they do afterschool tutoring, etc., so he can easily make up any work that he misses. This is the part that stresses me out, his schooling.

So, the Immunology clinic will call me later today (supposedly) and try to fit him in next week. I am going to try and pull for a Wednesday travel day, since I will be out of town Sunday-Monday. The later the better of course.

Also we have upped his dosage of steroids and CellCept once again. We were at 8mls twice a day for the steroids, we are now up to 16mls twice a day on that. We were at 850mg a day on the CellCept, we are now at 1,000mg on that. Boy is going to end up eating me out of house and home (not that he doesn't already do that).

His counts:

Platelets: 8,000 (were at 25,000 last week) EXTREMELY LOW
Hemoglobin: 13.2 (the same as last week) BORDERLINE LOW
WBC: 5.5 (they were at 4.2 last week) NORMAL
Neutrophils: 70 (they were at 64) BORDERLINE HIGH
Bilirubin: 0.8 (they were at 0.7) NORMAL
Retic Count: 2.4 (they were at 2.5) HIGH

 Until next time....prayers and thoughts as always! :)

 Update: Immunology Clinic called me, we have to travel to Chapel Hill on Tuesday, to get testing done.
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