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?"

Thursday, September 4, 2014

Ying Yang Game-9/4/14

Jordan went to see Dr. Gold about two weeks ago, it was a good appointment. We were in/out in about an hour, which was record timing for us. He is impressed with how well Jordan looks and feels, considering his counts are not in normal range.

They just called me this morning about yesterday's lab results.

Hemoglobin is 12.4 (down slightly from 13.0 on 8/12/14)
Platelets are 84 (up from 54 on 8/12/14)

As you can see his hemoglobin is playing the ying yang game. Went from 12.7 to 13.0 back to 12.4. We did labs yesterday, I am waiting for his nurse to email the results to me. Hoping his hemoglobin hasn't dipped again.

Dr. Gold is concerned though, because we just cannot get his hemoglobin up past 13.0 the past 3 months. I don't know if Jordan's body is still trying to get over the shingles incident we had to endure in June, or what. Typically September-January is when Jordan flares up, and his counts start dipping, and then we are doing the hospitalization crap all over again. I pray that will not be the case this holiday season. But due to the fact his counts are like a rollercoaster ride right now, they are going to look into increasing his CellCept, which has me a little worried, since it does suppress your immune system. Only thing I can do as a parent, obviously, is to keep him as healthy as possible, and keep him away from anyone sick (which is hard to do, since he is in school everyday).

We never did do his allergy testing earlier this year, I had assumed (as I mentioned in another post) that it was just regular allergy testing, but Dr Gold told me it wasn't, that its more along the lines of testing of his immune system to see what is going on. So they are going to see about getting him another appointment for that in Chapel Hill, which means a day of traveling in the near future. Jordan and I will probably make plans to stay the night up there when that happens, so it isn't a whole day of traveling (its almost a 6 hr drive round trip); apparently the testing is an all day thing, which shall prove to be fun, since he doesn't have the best veins and its always a struggle to get bloodwork from him.

Until next time.....prayers and thoughts will be appreciated as we continue this journey.
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