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?"

Saturday, May 30, 2015

May Update-5/30/15

Sorry its been awhile since I have updated Jordan's page; believe me, it was not by my own doing.
Doctors finally emailed me this past Wednesday (3 weeks after the last blood draw) and wanted me to take him in yesterday for labs. Also told me that his hematologist wants to do another round of chemo (Rituximab) this summer. I was confused by that, because Jordan's counts have been steady since November when he finished the first round. But apparently after 6 months post chemo, the B cells tend to regenerate after Rituximab, and that has been the case for Jordan. Although the level is very low, the B cells have returned.
For those that aren't familiar with the Rituximab treatment/process for ES patients...Rituximab is used to deplete the B cells in their bodies, so that their immune system no longer sees them as foreign antibodies. When that immune system recognizes them as foreign, the immune system becomes overactive, and starts killing off everything (platelets, white blood cells, red blood cells, etc). So with this treatment, the idea is to deplete the B cells, and that the immune system will quiet down. It doesn't work for every ES patient, what one treatment may work for one ES patient, it may not for another. Some see results right away (as Jordan did) and some, not at all. Unfortunately for those that see results right away, it becomes a waiting game to see when their body will regenerate the B cells again, and then to see when the immune system will recognize the B cells and start attacking again.
After talking to Jordan that afternoon, he wants to postpone another round of chemo right now, continue labs as usual; and if any of his blood counts start decreasing at the rapid rate they typically do, (or if the B cell levels increase dramatically), then we will go with another round of chemo. With him turning 15 this summer, and having dealt with this autoimmune disorder for over 10 years; we feel its his body, and he DOES have a say on what goes into it. Of course if any of his decisions affected his overall health, Brian or I would step in and override that. But I don't think waiting to see what his body does on its own is wrong.
We still need to talk our decision over with Jordan's rheumatologist and hematologist and go over a treatment plan, and see what their opinion of waiting is. We go to Chapel Hill in June, so I will have an update in about a month on what went on with that appointment.
Otherwise, his lab results from yesterday, were "okay" not great, but just "okay".
Hemoglobin 13.1 (L)
Platelets 175 (N)
We will leave his steroids at 2ml twice a day (6mg) because of his dip in hemoglobin; he has exams starting next week for school, so we don't want him to risk feeling too fatigue or bad during that. We will repeat labs when we go to Chapel Hill in June and go from there.
Continued thoughts and prayers!
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