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, May 21, 2014

Weekly Update-5/21/14

We saw Dr. Gold on Monday, and again approached him with the request to remove the PICC line, he answered me with, "not until we are completely weaned off steroids". So I showed him Jordan's PICC area, the blisters, the redness, the welts, how he is allergic to the adhesive of the dressing. He was a bit apprehensive about it, but finally agreed that if the lab results come back good, we will remove the PICC line Wednesday morning.

Left the appointment with a new appointment scheduled for Wednesday morning to have the PICC removed.

This morning came, and as I was getting ready to head to the clinic for the appointment, with Jordan, I received a phone call from the clinic nurse saying that no order had been put in to remove the PICC line. That she would make some phone calls and see what was going on. So I turned around and dropped a very disappointing boy off at school.

I spent the entire day off and on the phone with Jordan's nurse and the clinic nurse; all three of us were making phone calls to Chapel Hill, nobody answering, and leaving messages. I was stressed out and very pissed off all day.

Finally around 2:30PM, Diana from Chapel Hill, finally calls me. Says his labs looked good, and said that Dr. Gold did not want to remove the PICC until Jordan was done with the steroids; BUT he would leave it up to me on the decision. I told Diana, I wanted it removed because of the problems we are having with it, and she said okay, then made a phone call to Jordan's nurse with instructions.

His nurse, Molly, came after school, and we removed it. Jordan was very nervous and over whelmed about the entire thing, but he did good, and within 20 mins it was out of his arm.

See his poor arm (left arm), all red, covered in welts.

They also decreased his steroids again from 30mg to 24mg a day; and instead of weekly blood work, we are now going to do bi-weekly blood work. So yet another step into remission. :)

We are suppose to see Dr. Gold next month, on June 16th, but do not have an exact time yet, apparently he is overbooked that day, since its a half day clinic; they said they would try and fit us in, so we will see if that appointment sticks. Until then.

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Wednesday, May 14, 2014

Late Update-5/14/14

I haven't updated in about two weeks, so I figured I would throw in a quick update.

Luckily there has not been much to update on with him. He is doing great, looks/feels great. At least once a week his Evans does take a toll on him, with feeling fatigue. But that just comes with having this blood disorder. Last week he came home from school, was asleep by 5PM and slept until I woke him up the next morning. Of course I checked on him a couple of times, but he was just tired, some nights he just doesn't sleep good and eventually it catches up to him.

He had labs done this past Monday, haven't heard from Chapel Hill on those counts yet. But last week his counts were good, I'd like to see his hemoglobin rise more, but at least its stable.

5/5/14 Labs
Hemoglobin: 12.8
Platelets: 188
Neutrophils: 7

He has his next appt with Dr. Gold on Monday, where, once again, I will request to have his PICC removed. Its very frustrating to keep being told no, not right now. I understand the doctor's concerns, we all lost a lot of sleep back in December and January with Jordan, it was very scary to almost lose him. But its been 5 months since he has received any treatment through his PICC, he only gets blood drawn once a week from it. He has lost a lot of muscle tone in that arm, and IMO its ready to come out. He has only 21 school days left, and I want him to enjoy his summer vacation with his friends and not be restricted due to the PICC line. He has already had to say no a few times to swimming at the beach and/or pool with his friends, and I just do not want that type of summer for him, especially when he starts high school in August, and I want him to have as much as a normal freshman year, as he can. He wants to try out for the swim team in high school (whew on that, no contact sports to worry about).

I pray this fall/winter will be a quiet one for him, since that is when he tends to flare up with his blood disorder. I am hoping the CellCept he is on, will help with that. Not sure how long the doctor plans to keep him on it, but for the meantime, it seems to be working, so I am okay with that.

Will update next week, after his appointment.
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