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, August 6, 2014

Overdue Update-8/6/14

Didnt realize its been so long since I have updated (almost two months). Last time I updated, we were on Day three of being in the hospital with shingles. So let me backtrack and update you all....

Jordan ended up being in the hospital for a total of nine days, which was mentally exhausting. He missed the last three days of school, and his 8th grade graduation, but luckily his homeroom teacher stopped by the house to drop off his awards that he received. Dr. Gold did not want him discharged until all the blisters had scabbed over and we knew that it was not spreading.

He received treatment everyday for the shingles, we had only one issue with his veins, and that was with the first IV that was placed...vein blew a couple of days later, had to get a vein specialist in to put another line in, once that was done, we were good with the IV.

He did receive one treatment of IVIG the day before he was discharged, because his platelets were a little low (not sure of the number), it wasn't a critical low number, but better safe than sorry is always the hematologist's motto.

Since then, its been pretty much an uneventful summer, haven't seen Dr. Gold since May. With Jordan being in the hospital in June, we missed that appointment, and never got a rescheduled one for July. But we do see him in two weeks, which we are excited about since its been three months.

I am waiting on lab results from Tuesday's lab work. Chapel Hill called me on Friday and said his platelets were very low (39 and they were at 136 on June 2nd). So we redid labs this week to see if it was a fluke or not. Keeping fingers crossed on that, or else Jordan will go back on steroids and end up hospitalized to get IVIG treatment again (ugh).

And well thats pretty much it on Jordan, will update again if anything changes.
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