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, May 14, 2014

Late Update-5/14/14

I haven't updated in about two weeks, so I figured I would throw in a quick update.

Luckily there has not been much to update on with him. He is doing great, looks/feels great. At least once a week his Evans does take a toll on him, with feeling fatigue. But that just comes with having this blood disorder. Last week he came home from school, was asleep by 5PM and slept until I woke him up the next morning. Of course I checked on him a couple of times, but he was just tired, some nights he just doesn't sleep good and eventually it catches up to him.

He had labs done this past Monday, haven't heard from Chapel Hill on those counts yet. But last week his counts were good, I'd like to see his hemoglobin rise more, but at least its stable.

5/5/14 Labs
Hemoglobin: 12.8
Platelets: 188
Neutrophils: 7

He has his next appt with Dr. Gold on Monday, where, once again, I will request to have his PICC removed. Its very frustrating to keep being told no, not right now. I understand the doctor's concerns, we all lost a lot of sleep back in December and January with Jordan, it was very scary to almost lose him. But its been 5 months since he has received any treatment through his PICC, he only gets blood drawn once a week from it. He has lost a lot of muscle tone in that arm, and IMO its ready to come out. He has only 21 school days left, and I want him to enjoy his summer vacation with his friends and not be restricted due to the PICC line. He has already had to say no a few times to swimming at the beach and/or pool with his friends, and I just do not want that type of summer for him, especially when he starts high school in August, and I want him to have as much as a normal freshman year, as he can. He wants to try out for the swim team in high school (whew on that, no contact sports to worry about).

I pray this fall/winter will be a quiet one for him, since that is when he tends to flare up with his blood disorder. I am hoping the CellCept he is on, will help with that. Not sure how long the doctor plans to keep him on it, but for the meantime, it seems to be working, so I am okay with that.

Will update next week, after his appointment.
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