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, March 21, 2014

Quick Weekly Update-3/21/14

Sorry that I am updating this late, they just called me a few mins ago about this past Monday's labs.

Short and sweet conversation, didn't even get his lab results. Phone call was basically to tell me that they wanted to decrease on his steroids again. So instead of 60mg a day, we are down to 48mg a day. So I am assuming all his lab counts were good since we are decreasing steroids again, just don't have an exact figure in front of me to compare from the previous week. She did mention that they are wanting to rapidly decrease him from here on out, long as his counts are good. So I am hoping by the time we go on vacation we will be completely off the steroids, which means he wont have to take the other two with it (I hope, unless he needs to stay on them because of the CellCept). I assume he wants him to remain on CellCept for the meantime, but I will ask about that when I talk to them next week, or if he wants to wean him off that too, or is that something he will be on for awhile (because it seems to be working).

We had his appt with Dr. Gold on Monday, here in town. Everything was good, I mentioned removing the PICC line, and Dr. Gold was a bit weary on that (IMO) but said he would do whatever we wanted to do. I guess the weariness is from still doing weekly blood works; but like Jordan and I both told him, he can take getting poked by the nurse once a week; done it for the past 7 years during flare ups, we can do it again.

So I mentioned again to Diana (Dr. Gold's nurse) when she called me a few mins ago, that we wanted it removed. Told her we go on vacation in three weeks, and he has been having some issues with blood back-flowing into the line (which I mentioned at Monday's appt-and no one seemed concerned about that, which I guess its common? hell I don't know), so I have had to up his Heparin from 2ML to 4ML, and also had to re-position the clamp, to stop it from doing that, so far so good, its been about a week since I have seen any blood in the line. Told her it was just ready to come out, its been in for three months now. She said that he had mentioned SOMETHING about it this week, but the conversation didn't really finish, so she would shoot him an email tonight, and call me on Monday about that. I assume they will make us come up there for that removal, which I am fine with it actually. I will make a day trip with Jordan, up there, just to be done with it all. I just want it out before we go on vacation next month, so he can enjoy himself.

Jordan also had his monthly breathing treatment by the respiratory therapist, and that went fine. Go back next month for that.

Anyway, thats pretty much it with Jordan. He still is looking & feeling great, no more muscle aches; I did keep him home from school on Wednesday, because he said he had a sharp pain in his stomach, but by evening time it was gone. So no telling what that was about.

Until next week.....
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