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, February 6, 2015

Quick Update-2/4/15

Today marks 12 weeks post Rituximab for Jordan. Getting nervous. Jordan's platelets are slowly decreasing again. Makes me think the chemo treatment didn't work. Granted his counts are still good, and they remain in normal range, and a lot of ITP/ES patients would LOVE to have these counts; but its also a reminder that any dip could possibly be the start of another roller coaster ride with his platelets. Fingers crossed, they don't continue to dip, because I honestly do not know if we have any other options as far as treatment goes. Nothing else has worked so far for him, and I dread that this treatment didn't work and splenectomy will be the next words brought up; and I stand firm that I will save his spleen, unless its a life/death situation. So basically its just a wait and see game, as usual with this disease.

Infusions at home are still pretty hard on Jordan. Last week, he fought me hard on it, basically threw a tantrum in front of the nurse (took everything I had not to lose my cool); but I also know the premeds make him moody (mostly the Benadryl), so I just have to push through it with him and hope it gets easier. We had to bite the bullet and fill the prescription for the numbing cream this week ($54-thanks insurance for not covering it @@). So I am hoping tonight's infusion will go much smoother; nothing I can do for the burning part of it (once we start the infusion, it burns the first few minutes going in), but I am hoping at least the poking part, will be a lot easier. and that the numbing cream does what its suppose to.

Otherwise, same old around here, below are his counts:

240-1/7/15
218-1/21/15
193-2/4/15

As you can see they are dipping by at least 10 each week; hopefully we wont see it continuing to dip in the next two weeks. His hemoglobin and WBC are in normal range, and his neutrophils are also in normal range; so at least we are good in that area.

As always thoughts and prayers.


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