Friday, May 17, 2013

New Eliah Update

Tuesday, July 8, 2008

Hello to all. I just wanted to give everyone an update on Eliah. Thursday, Eliah had his first "visible" bruise, on his lower back. It was not large, as you will see by the picture, but is of concern. I called the doctor and we were told to give him an extra treatment. Saturday he was still really upset, so we gave him an extra treatment again. Then we went to the Hematologist yesterday to follow up. The doctor noticed some unusual things with Eliah and seems to be concerned that Eliah may have new bleeding on his brain, and we are to get another CT scan on Thursday. Until then, we do his shots every 12 hours. They are also going to draw blood to check for inhibitors while he is sedated. Inhibitors are an "immunity" to replacement clotting factor.

What the doctor found concerning was this: First, Eliah has been getting motion sick (freaking out in the car and when certain videos are on tv). Second, his eye shaking has started up again. Also, the veins in Eliah's face have started to swell. In good light, you can see almost every vein under his skin. And I think this is related, Eliah's nose has been running for about a month. Claritin does not work, and he is not running a temperature. The doctor just seemed to focus a little bit on that point.

In addition, it has been getting harder to get blood from Eliah's port. The doctor seems to think that Eliah's blood is clotting near the end of the port, and creates a vacuum when I try to pull back on the syringe. So they are going to put something in his port to reduce that clotting. We are also going to check to make sure Eliah's port is still large enough for him. He has gotten a lot longer and will need to have surgery to replace his port with a larger one. We just need to find out whether it's sooner or later.

Yesterday we also went to the Nephrologist to talk about Eliah's blood pressure. So far his blood pressure has remained in the normal range, so they took him off Norvasc. He is still taking one blood pressure medication though. The only thing of concern is that about every 7-10 days, Eliah's blood pressure goes up for about 3 days, and then back down to normal. Who knows what that means.

I also talked with the Geneticist yesterday and got some of the test results back. The DNA test, looking at the X chromosome, came back with just the Factor VIII (Hemophilia Gene) deleted. They speculated that maybe some other genes were affected, but it is only the Factor VIII. Good. The test they did for one of the Glycosylation disorders came back negative, and we are still waiting for the two others they checked for. It will be another two weeks before we find out the results to those. They have now added a request for a total chromosomal spectrum analysis to see if there are any other abnormalities. Who knows when we will get the results to that.
Anyway, that's all for now. I will hopefully be able to update on Thursday after the CT.


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