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?"

Friday, June 26, 2015

June Update-6/26/15

So we headed up to Chapel Hill last week to see Jordan's rheumatologist and hematologist to discuss whether or not Jordan will be doing another round of chemo (Rituximab). Last I had heard from the doctors is that Jordan's hematologist was going to discuss it with the rheumatologist and go from there; so I was thankful our first appointment of the day was with her so I could talk with her about our thought process with it (love Jordan's hematologist, but he tends to jump the gun a lot, very over protective of Jordan since the incident in December ).

Appointment with her went well, no change on his SubQ-Hizentra at home, which is fine, because his IgG levels are holding steady and much higher than they typically have been. Tried to get Jordan to take over the appointment and discuss his feelings on doing another round of chemo; he did okay, but eventually I had to step in and go a little further with our thought process of wanting to wait it out and see what happens. She was in agreement with me completely (thank god), so now I have her backing me up on our decision to wait. Jordan also signed up for the CVID research program while we were there.

Saw Diana and Dr. Gold, discussed with Diana about wanting to wait on doing another round of chemo, and lets see what his body does on its own. Granted we know he will have to do another round eventually, but it could be a few more months, or even a year or two down the road, before his immune system recognizes those B cells as foreign objects and starts attacking. And since we have never done this treatment before, we don't know when that will happen, so we would like to wait and see before jumping the gun. They agreed with us, and said lets see what his counts do over the summer and go from there.

Did labs, and his veins blew twice...they took 10 tubes of blood from him (retesting for ALPS again), and since his veins blew twice, the CVID program was not able to get their five tubes of blood; so we will allow them to do that when we go back in December (pending his counts hold up until then).

So for now, he is borderlined stable, and we will continue monitor his counts and health and go from there.

6/16/15 Chapel Hill Labs

Platelets: 157 (N)
Hemoglobin: 13.6 (L)
IgG: 887 (N)

We decreased his steroids to 1ml twice a day. He also has a hint of thrush in his mouth, so they put him on Nystatin to help with that for a few days.

6/24/15 Labs

Platelets: 162 (N)
Hemoglobin: 13.4 (L)

No decrease on steroids, we will repeat labs on July 6th and go from there.

As always, continued thoughts and prayers! :)


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