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, January 29, 2014

1/29/14 Weekly Update

Sorry I didn't update yesterday when I got the lab results in, things have been crazy the past 24 hrs. We had a winter storm move through that put several inches of ice on the ground; which has shut our town down completely (we live in southeastern NC); kids have not been in school since Monday, and unsure if they will go back Friday or Monday.

Things are looking stable, that's the best word I can use right now. Counts are not going up, and they aren't really going down either (his platelets are going back and forth, but still in the normal range). We have decreased his steroids again, but this time the doctor only decreased it by 5mg (instead of the 10mg as we have been doing the past two weeks); so we are at 85mg right now on that (13 ml in the morning and 15 ml in the evening), other meds are still the same, no mention of taking him off CellCept, I have about 6 more weeks left in my fridge on that, and I guess I will ask at the next appointment about either a refill or are we weaning him off that.

The Allergy and Immunology Clinic in Chapel Hill called me in the latter part of the week, last week and scheduled him an appointment to start allergy testing, which is good news; bad news is, its not until the end of April. Since he had no viruses or infections going on when he was admitted into the hospital throughout the month of December, they just want to make sure its not allergy related causing these flare ups of his counts to rapidly decrease out of the blue. We did mention that we got our first REAL Christmas tree, 4 days before he went into the hospital. They were "hmm" about it, but said its probably a coincidence, but they will test for that just incase. They said to expect to be there for hours for testing, and our appointment isn't even until 12:30PM, going to be a long day. Luckily our family vacation is the week before, so we should feel refreshed and ready to tackle this next hurdle together.

Here are this week's counts:

Hemoglobin: 11 (down from 11.4)
Platelets: 195 (down from 229)
WBC: 4.1 (no change)
Retic: 1.9 (up from 1.2)

His Complete Neutrophil count is also good.

Jordan is doing good, face has broken out a little bit, since we are now weaning him off the steroids (but his face is like that when not on steroids, thanks to teenage hormones). Still has the PICC line in, and I have become a pro on changing the dressing every week, and doing the flushes everyday. But I cannot wait to not have to play nurse anymore, its mentally exhausting. He is definitely a trooper in all of us, but I know he is ready to get back to his normal life. Even with being absent all of December, from school, still got A's/B's on his report card; very proud of him.

Next blood draw is next Monday, continued thoughts and prayers.
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