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?"

Thursday, December 4, 2014

12/4/14 Update-A Year Ago Today

So I am two weeks behind updating this blog, which I guess is good, because no news is good news right?

Its been a year, since we started all this craziness, not the actual ITP adventure, thats been ongoing for 8+ years, but the Evans Syndrome Saga. This was my post on Facebook exactly a year ago:


Scariest day of my life, finding him like that. Images embedded into my brain for the rest of my life of coming so close to losing him. I only hope and pray to never go through that again.

Anyway, not to dwell....

As I said in the last post, everything went well in Chapel Hill, also we did December's IVIG last week here in town, since Jordan is without insurance until January 1st (thats a whole other story @@)

His platelet count had dipped a little, not by much (went from 222 to 202), but as a parent with a child with his disease, any drop is never a good thing, and puts you on high alert. So I am that hovering parent this month, double checking for bruises and any petechia, ugh, I hate being this way.

I am unsure on when we will have our next blood draw, we did decrease on steroids two weeks ago, not by much, went from 16ml twice a day to 13ml twice a day and everything looked good on last week's blood draw. I am going to assume Dr. Gold will want blood work done before Christmas, which is three weeks away (crazy), but we will see. I cannot wait to get him off all this medication. Once we are completely off the steroids, I will ask about when we will be weaning off the CellCept. I'd like 2015 to be a good year for him and us as a family, but once again, this disease, we can have some good days, but a lot more bad days, so we tend to live in the moment and not the future.

I have a meeting next week for disability for Jordan, please keep your thoughts and prayers with us on that aspect. I dont care about the check every month, but the insurance aspect of it, would greatly help! Fingers crossed!

I will update whenever I have something to update I guess. I hope everyone has a Merry Christmas, and Happy Platelets!


Continued thoughts and prayers as always! <3

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