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Old Wed Aug 25, 2010, 02:49 AM
paulo paulo is offline
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Join Date: Aug 2010
Location: Los Angeles, CA, USA
Posts: 3
Thanks for the replies-- Yes, his cyclosporine level was quite high last week (660) and this week its 489. They're reducing his dosage again to get him in that 200-400 range. Since he's been off the prednisone, he was much more pleasant. And without the prednisone (and reduced cyclosporine count) his headaches seem fewer and less severe. They've started a new drug (LORTAB) which we can administer at home for headaches....if we ever get there.

Unfortunately he had a high fever last night and his ANC dropped to zero. They're doing blood cultures and administering fever reducing meds. And they administered a small solu-medrol steroid IV to see if the fever was from the "cold turkey" cut-off of the prednisone. I (semi-jokingly) told them that his fever was from a mosquito bite... I've squashed three mosquitos in their super-pure hematology wing in the month that we've been there... Can you imagine that-- mosquitos in a hematology ward. Oh the irony. And we're not talking about a clinic in the back woods of Central America-- we're at a recognizable children's hospital here in Los Angeles County.

Since he had a spinal tap, they had to transfuse platelets and red blood to prepare him for the procedure. But, actually, his red cells were up today from Sunday's numbers. Their intent moving forward is to transfuse him only when he gets down to about 7...and then only transfuse him up a little bit so that his bone marrow will still sense the need to make more blood.

His blood pressure has been all over the place. At times it's been high enough for them to administer some BP meds. The doctors had a theory that his high BP was driving the headaches but then he had one or two headaches with "normal range" BP. Shot down that theory.

I wish he could communicate better. All he knows at his age is "my head hurts", and now, unfortunately, he knows "I'm gonna throw up". But he's getting better at telling us earlier, when the headache isn't as bad. Before, he wouldn't say a word until it was really bad and all that would help was morphine. He's probably years away from knowing the difference between a pressure headache, sinus headache, buzzing sensation and all that stuff.
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