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?"

Wednesday, October 1, 2014

Second Diagnoses Confirmed-10/1/14

So Jordan and I traveled to Chapel Hill yesterday to see the immunologist doctor that Dr. Gold had referred us to. Loved her (Dr. Wu), she was absolutely awesome and took her time explaining everything to Jordan and I, and answering all of our questions.

So the second diagnoses, that would be the underlying factor for Evans Syndrome, for Jordan, is called CVID (I attached a link so you can read it). But basically in English terms, everyone has B cells in their body, they produce protein, which is a good thing. But sometimes they will produce antibodies in your body that aren't suppose to be there (foreign objects). Now typically when that happens, your immune system will kill off those "foreign objects" and that is that. Well when you have an autoimmune blood disorder like Jordan has, and this happens, your immune system goes into overdrive and just kills off everything, the good and the bad (platelets, red blood cells, white blood cells, etc)...and then you get the diagnoses of Evans Syndrome. Hope I explained that well enough for you to understand.

So now the plan of attack is to do four doses of Rituximab; given once a week (I have heard different things, such as once a week, or once every other week-we will see). He will be given this in the hopes of killing off the B cells in his body. Also on top of that, do IVIG. Now Dr. Wu said that Jordan may be one of those patients that needs weekly IVIG (which can be administered at home as an injection-which will be interesting nonetheless).

Basically right now, its up in the air as far as when we start treatment and where (I am just waiting for a phone call to see where to go from here). Again, I am 2½ hrs from Chapel Hill, which is where they are use to doing the treatment of Rituximab. However, they now have a certified chemo nurse at our local hospital that could do the treatment. The problem is, the treatment has never been done down here in my town, so its a matter of finding out if they can even do it here locally. If not, then we have to make weekly trips to Chapel Hill for the treatment.

Anyway, so thats what is going on this week here in the Jackson household. Here are his numbers from yesterdays lab work.

Platelets: 7 (Last week was at 8)
Hemoglobin: 13.8 (Last week was at 13.2)
WBC: 4.6 (Last week was at 5.5)
Bilirubin: 0.6 (Last week was at 0.8)

IgG: 443 (600-1700 is the normal counts)
IgA: 8 (40-400 is the normal counts)
IgM: 25 (35-290 is the normal counts)

Also tested COOMBS positive

Until next time.....
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