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 11, 2014

This Week's Update-9/11/14

Jordan has been doing good with the CellCept dosage increase, no issues with it, thankfully.

Bloodwork shows counts have dipped again, which we fully expected due to the CellCept increase; just don't like any type of dips in his blood counts, worries/stresses me out.

Platelets: 50,000 (84,000 last week) LOW
Hemoglobin: 12.2 (12.4 last week) LOW
WBC: 3.9 (4.1 last week) LOW
Neutrophils: 64 (68 last week) GOOD
Retic Count: 2.5 (1.9 last week) HIGH (This one worries me a little bit, so keeping a eye on it)

But otherwise, Jordan is feeling/looking great, no physical signs of any low counts (even when his platelets dropped to 39 at the end of July, totally took us by surprise).

We have an appointment on Monday to see Dr. Gold as per our monthly appointments. Guess we are going to give it another week or two, to see if his counts finally stabilize from the CellCept increase, and hopefully they do, so we can start the decrease on steroids.

September-January always has me on the edge of my seat with Jordan, this is typically when his auto immune flares up. I need to see what is going on with the allergist appointment and see if that has been set up yet. I really want to see if Jordan has an underlying primary immunodeficiency other than ALPS (which Dr. Gold is pretty sure he has, but not definite yet), that and I have tons of questions for the allergist. I have a strong suspicion that Jordan has an underlying PI (primary immunodeficiency) called Wiskott-Aldrich Syndrome on top of Evans/ALPS. But again, we will have to wait and see.

Until next time...thoughts/prayers as usual.
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