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?"

Friday, January 10, 2014

Thursday Update-1/10/14

I don't have all the numbers in front of me, Chapel Hill called me while I was driving, so I couldn't write everything down. His nurse hasn't received the lab work email yet, so she hasn't been able to send it to me just yet (I will update this when I get that email).

His counts have dropped a little bit...this is what I could remember from all the numbers she was throwing out at me.
WBC 2.9 (2.9 on Monday)-I think she said this number, again, not quite sure until I see the lab work myself.
Hemoglobin: 9.6 (11.6 on Monday)
Platelets-211 (359 on Monday)

They aren't concerned about the drop in numbers, because they have lowered his steroids a little bit, and he is still on a strong dosage of CellCept. Basically his body needs to learn to do everything on its own again, instead of relying on these med's; its going to take some time. We have an appointment Monday morning, here in town (Dr. Gold and his team are coming down here for their monthly clinic work); so that gives us a little break from driving; so hopefully Monday will give us a higher number count (continued prayers and thoughts are appreciated).

We also have an appointment on the 21st in Chapel Hill, he is due for his monthly breathing treatment (I am unsure of the name of this treatment and not quite exactly sure what the treatment is for). He received it when he was admitted into Chapel (Christmas week) for the first time, and Brian was with him then. So I'll have to ask about it at Monday's appointment.

Right now he is suffering from the beginning stages of thrush (has a few ulcers under his top lip and in the back of his throat). We ran out of his Fluconazole (another name for Diflucan) on Monday, had the doctor call in another script for him through CVS; and it was on backorder. So I have been fighting them all week on filling the script; FINALLY was able to get it filled this afternoon; so hopefully in a day or two his mouth will feel better.

Next update will be Monday afternoon; until then prayers and thoughts please.
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