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, April 29, 2014

Quick Weekly Update-4/29/14

Sorry its been so long since I have updated, not much to really update about, which is great.

Last time I updated, it was about 10 days before we left for vacation. We had a blast, kids really enjoyed themselves, especially Jordan, which was so heartwarming to see. It even snowed on the second day we were there, which was crazy! I think we saw all four seasons that week.

Jordan's counts are still stable, not much change there either, his Hemoglobin has stayed around the 13.2 range, platelets go back and forth from 140-170, still in the normal range. Liver enzymes look good. All in all good counts so far.

We saw Dr. Gold last week, very quick appt, in and out., everything is fine, spleen is still not normal, but its slowly unswelling back to normal size. We have to remember it was severely swollen, all the way down to his waist, so its going to take some time getting back under those ribs. At the present time, its about 6 inches from his ribs, so we have awhile to go. So Jordan is still pretty restricted to what he can do, because we have to be careful of any impact on his left side (and of course him having that PICC in place also).

We go back to see Dr. Gold on May 19th, so I am once again, going to mention removing the PICC line, especially since we have only 33 more days of school left. I dont want Jordan to be too restricted to what he can do, as it stands now, he can't swim in any pools, or go to the beach, because of the PICC. And I dont want him to not have a good summer, especially since the kids want to go to Myrtle Beach for a weekend in July, for their birthdays. So we shall see, again, I am so over it (flushing and dressing changes).

Until the next update.
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Wednesday, April 2, 2014

Quick Weekly Update-4/2/14

Jordan has been sick this week, he came home early from school on Monday not feeling well. Achy muscles and he said he felt like he had a fever. No temperature the early part of the day, but when his nurse came by that afternoon for labwork, he had a low grade fever of 99.9. By evening it went up to 100. So we started Tylenol every 6 hrs. Kept him home from school yesterday, because his fever spiked up to 102.5. 

Chapel Hill called me later on yesterday afternoon, to go over Monday's lab results. His hemoglobin, platelets, and MCV had dipped; not by much, but enough to cause some alarm, because his counts have not dropped since December. Hemoglobin had dipped to 12.8 (down from 13.6 the week before) and platelets had dipped to 161 (down from 191 the week before). I mentioned that he was sick with a fever and achy muscles; so they decided it would be best if I brought him into the ER for some bloodwork and a flu test, to see what was going on. With him being on CellCept, he is prone to more illnesses and sickness, so we have to be overly cautious with him.

They did blood cultures from his PICC to see if there was a PICC line infection, took some blood cultures from his other arm, did a chest XRAY to check for placement of his PICC line, also did a strep and flu test (so not fun). I do not have all the results, as they have to wait to see if anything grows, but right away his strep test came back positive, so that explains the fever; everything else looked good though. So he is now on Amoxicillin three times a day, and home from school, until tomorrow. Luckily we caught it early, because he was not complaining of any throat pain. His hemoglobin had went back up to 13.1 but his platelets had dipped again, down to 141; so we are watching for any petechia. I hope it only dipped because he has strep, keeping fingers crossed that this is not Evans related. Hospital will call me if anything comes back positive (such as the flu), but the doctor nor I anticipate its the flu, its probably just strep. 

(Woke him up this morning to do medications, and his temperature was normal, so thats good.)

As for removal of his PICC line, his doctor does not want to remove it at this time. He is afraid that if we remove it, and Jordan needs treatment again in the near future, we will have to resort to something more long term (such as the port), and thats not something we want to do. So we have to change our plans on what we are going to do during our vacation (still going to the same place, but the things we wanted to do up there, now has to change); but we will make due, the whole point of our vacation is to just get away from "real life" for a few days, and enjoy ourselves out of town. We will figure it out. :)

Until next week.....
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