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, December 25, 2013

Merry Christmas

Merry Christmas from The Jackson Family!

Update on Jordan, his Hemoglobin is still low (6.6), but its holding stable, he has not received any blood transfusions since Monday night, and his Hemoglobin hasn't dipped at all (he has been on a very heavy dose of steroids the past two nights and received IVIG yesterday morning). Platelets are also holding steady at 99K. They are going to up his dosage for IVIG and give that to him today at some point. Dr. Gold thinks we are about to finally get over the hurdle that we have been striving for. Says Jordan looks REALLY GOOD right now. He has also given us the option for them to either come home tonight, after treatment; or wait until tomorrow. I think the decision we made, is for Brian & Jordan to try and come home tonight; and we will get a nurse to come here tomorrow, and do another CBC to see if his counts are still holding. Of course if counts have dropped, I will be making the trip back to Chapel Hill with him this time. But fingers and toes crossed, that Dr. Gold is right, and we are finally getting his immune system stabilized, to where we don't have to make these trips every other day like we have been. 
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