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?"

Wednesday, October 8, 2014

An Increase-10/8/14

Jordan's nurse just called me to tell me the good news, his platelets have risen to 41 (from the 16 on Saturday). Now its probably because of the boost from the IVIG, and we will probably see a decrease in the next two weeks. But for now, I will take that high count, which means a small break the rest of the week for us.

I filed for disability for Jordan yesterday, that took me hours to do. I didnt realize you have to remember every tiny, tiny hospitalization, when he saw a doctor, nurse, etc etc. Even after filling out the paperwork and electronically sending it, did I realize I forgot to put in that a homecare nurse comes once a week to draw labs and check vitals, and I also forgot the strep incident back in April, UGH. Thankfully I still have to sign medical release forms in person, so I will have to make sure to mention that. Fingers crossed, because its obvious I can't go to work with Jordan's medical issues. I mean he has been out of school for almost two weeks right now, and someone has to be with him, incase he falls, hits his head, starts bleeding, etc. No way would a job understand and hire me.

Still no word on when we are starting Rituxan or Homebound Schooling. I do know Jordan's school is waiting on the paperwork to be faxed back to them from Jordan's doctor. As it stands, he has missed 11 days of school, and is looking at an attendance failure, which I am going to have to fight with the school board if/when that happens.

Hopefully I get a phone call soon, I need to remind them about the paperwork, and I also need to see at what platelet count is Jordan safe to go to school, or if he even has clearance to go back; especially when we will be missing a lot when he starts the Rituxan treatment soon.

I am also working on a binder for Jordan's medical stuff. Important phone numbers, when he was hospitalized, what treatments he got, when he had outpatient stuff. Also need to write in every doctor appointment., etc etc etc. Right now I have a 1 inch binder...I will eventually be upgrading to the 5 inch binder here shortly.

Will update when I know more...thanks for your thoughts & prayers!

**Update**

Talked to Diana from Chapel Hill, he has clearance to go back to school for right now, since his counts are higher. She will fax the Homebound paperwork in the morning. I am going to email the school counselor tomorrow, and let her know what is going on. I would much rather do a 504 Plan for Jordan, so I will see what she has to say about that. Diana also is going to shoot an email to Dr. Gold and Dr. Wu about when we are starting the Rituxan, we all feel most comfortable doing the first dose in Chapel Hill, just to make sure he doesnt get any side effects from it. If all goes well, then the rest of the treatments can be done here in town. We won't make any changes as far as his medications go right now, want to wait a week or two before we decrease the steroids, just to see what his body does, once the IVIG is out of his system.


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