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?"

Tuesday, February 25, 2014

Quick Weekly Update-2/25/14

Never did hear from the doctor last week, normally I hear from them on Wednesday's, so if I haven't heard from them by tomorrow evening, I will call Thursday morning and see what is going on with everything.

We need to decrease steroids again, because (thanks to his nurse for sending me the lab report) he is still in stable condition, numbers are still slowly climbing (not as high as I would like, but we will still take it, as long as there is no decrease); he has been on the steroids for over 2 months now, I would like to have him off of them sooner rather than later.

I also need an appointment date for March, since they canceled our appointment this month; we need/want the PICC removed, its just no longer needed. Granted we are still doing blood draws weekly (and I am hoping to move to monthly here shortly), but the whole purpose of the PICC line was because he was having blood drawn every single day (multiple times a day), and his veins couldn't handle it anymore; they have since healed. Plus with us going on vacation mid April to TN, we just don't want to have to deal with it either, I want him to have a great time, in a normal setting, not having to worry about the PICC being in place. So with him being in stable condition, we would like it removed. I am even willing to make a trip to Chapel next week to do it, thats how bad we want to be done with it.

Anyhow, here are this week's counts, compared to last week's counts. No big change, but we are happy with it.

WBC: 4.7 (was 5.3 last week) still in normal range
RBC: 4.7 (was 4.6 last week) still in normal range
Hemoglobin: 12.7 (was 12.5 last week) almost to normal range
Platelets: 206 (was 226 last week) still in normal range
Neutrophils: 68 (was 74 last week) last week was a little high, but this week is in normal range
Retic: 1.2 (was 1.1 last week) still in normal range
Bilirubin: 0.4 (was 0.6 last week) still in normal range

Jordan is doing good, his face has broken out a bit, not sure if its just from being a teenager, or its something he is allergic to. We dont have the allergist appointment until the end of April up in Chapel Hill, so we will see on that. Doesn't seem to be bothering him at all. Otherwise he looks and feels great, ready to get back into his normal routine again. I only pray that his counts stay up for awhile, I know with this blood disorder, he can be fine for a few months and then everything goes back to square one again; so I am hoping for a lengthy period of time for the rest of this year, so he can enjoy his summer, and the start of high school in the fall.

Will update this post once I hear from his doctor about what the next course of action is.

They just called me from Chapel Hill, we are decreasing his steroids to 66mg a day (we were at 78mg); so we are getting there. Told her we needed a refill for CellCept, and I need an appointment date for March, because of the issues with the PICC; so she told me she would talk to Dr. Gold and give me a call later on in the week with the new appointment date. If I haven't heard from anyone by Thursday night, I will call Friday morning to reconfirm that I need an appointment date.


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