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, October 23, 2014

10/23/14 Update

Jordan and I headed up to Chapel Hill Tuesday evening and checked into our hotel room. Uneventful night.

Wednesday morning, got up bright and early and headed to Chapel Hill Hospital for a long day.

First thing was an hour long breathing test. Jordan did fairly well, but they think he may have some inflammation around the tissue (bronchial) area, nothing serious, but he may get an inhaler to help him on days that his chronic cough is bothering him. Otherwise, everything else looked good.

After that appointment, we headed up to the hematology floor, and got situated with vitals and an IV placed. They pretreated him before the treatment started with Zofran, Tylenol, Benadryl, and then gave him a low dose of Prednisolone into his IV. He passed out within 10 mins after that and slept about 2 hrs through treatment.

They started Jordan off slowly with the Rituximab drip the first hour and then every 30 mins afterwards, bumped it up by 25mg. He tolerated treatment very well, no reactions, and even this morning, there are no reactions (other than being exhausted, which is for the both of us, I didn't realize how draining yesterday was going to be for us). The entire treatment took about 5 hrs (they told us that the next three doses will be faster-I am going to assume 4 hrs, but I am fine with 5 hrs too); after the Rituximab treatment was done, he got another dose of Prednisolone that took about 20 mins and then we were allowed to go home. So it was a very long day for the both of us, a good 9 hour day at the hospital, and then a 3 hour drive back home.

Thankfully the next three treatments will be done at our local hospital, since Jordan didn't have any bad reactions with the first treatment. I do know that the next treatment is next Wednesday, but I haven't gotten a time yet on when we need to be there; if I haven't heard from Diana by Monday evening, I'll shoot her an email that night.

Platelets dipped more, hence the steroid booster before and after the Rituximab; Dr. Gold did tell me he will be doing the steroid booster after each Rituximab treatment to help out Jordan's platelets. Fingers crossed this treatment works, so we can come off the medications (especially the steroids) and it gives us a normal life for at least a year or two.

Also had Jordan's 504 meeting this morning to set that up, so that went well, and we can move forward, accommodations are below...

Will update next week after our second treatment, continued thoughts & prayers!

Specific Accommodations - Please indicate subject area and accommodation required:
1. If Jordan’s medical condition interfers with his attendance during standardized exams and local

exams/assessments; Hospital Homebound teacher will administer exams



Position of person(s) responsible for implementation: Hospital Homebound coordinator, student
2. Extended time on assignments, per county policy. Jordan will be provided extended time until the end of

the next semester to complete missing assignments.



Position of person(s) responsible for implementation:Teacher, Student, Hospital Homebound coordinator
3. If Jordan has a low platelet count (below 75,000) he cannot participate in physical activities (PE/Body

Conditioning/Team Sports/Beginning Tennis/etc)
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