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, January 8, 2015

Update 1/7/14

Haven't updated about Jordan since right before the holidays....
Headed to Chapel Hill yesterday and got blood work done for Jordan. Its been 8 weeks since his last dose of Rituximab, and everything still looks great! Looks like he responded well with the Rituximab. But in the 8+ years we have been dealing with this, January-July are our quiet months, normal counts, etc., so I am hesitate anyway. Time will tell for me, moreso in the Fall/Winter later on this year.
Week 1: 10
Week 2: 35
Week 3: 125
Week 4: 205
Week 5 (1 Week Post Rituximab): 222
Week 6 (2 Weeks Post Rituximab): 202
Week 14 (8 Weeks Post Rituximab): 240
Hemoglobin is 14.7, WBC is a little low at 3.9, but no concern from the doctors because his neutrophils look good. That and he is always border-lined low on WBC anyhow.
Immunologist is going to make arrangements with Walgreens to get Jordan started on IVIG SubQ at home in a few weeks. His IGG levels did drop again (they were at 1405 in November, they are now at 711), his immunologist would like him around the 1,000 area.
For those that don't know Jordan also has CVID, so he typically gets IVIG once a month (last round was right before Thanksgiving-didn't get it done in December due to the holidays), but we are going to transition him over to weekly subq at home. His hematologist thinks more along the lines of ALPS instead of CVID (the hematologist and Immunologist are in disagreement over this)...so we did more testing and sent that off to Ohio yesterday to confirm or deny the ALPS claim-which btw, was A LOT of blood to be taken, good lord. But thankfully his vein held up very well yesterday while 11 vials were taken from him (typically his vein would have shut down after the 3rd vial). All the green vials were just taken to test for ALPS. Crazy.
Other than the medical aspect of it, Jordan is doing very well, looks and feels great. So I am fully expecting a quiet 6 months from here on out. Like I mentioned above, July-December are the hell months for Jordan. So we are going to enjoy it while we can.
Happy Platelet Dance for you all!
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