At Jackson's December exam & blood work appointment in Boston, it was discovered that his viral load had skyrocketed & his t cell count had dropped, seemingly overnight(is that one word?). His adherence is great and he is feeling well, so we assumed the "blip" was due to the fact that they had used a different test than they usually do and merely took note. Well, on March 30th he went back, and his numbers are in. They're worse. They also did some pheno type testing, to see which drug, if any, he's possibly building a resistance to after 5.5 years on the very same regimen. that test result isn't back yet, but we all assume it's the Viracept/nelfinivir(a protease inhibitor). so he will stop taking that drug-which soon will no longer be manufactured due to it's high incidence of resistance anyway-and will be starting a new drug for the first time since beginning HAART(Highly Active Anti Retro Viral Therapy) in December of 03. I am a bit apprehensive about all this since any change in his daily routine throws him for a loop emotionally and everything gives him hives LOL. I am so glad he lives where he lives, is seen where he is seen and gets such great care. Dr. P, who writes for the New England Journal Of Medicine, knows so much, is always learning more, has so much confidence in what he does, which makes us feel confident.. and Boston University Medical is amazing. They sure treat the whole child there. physical, emotional... all of it. And he needs all of it lol.
He weighs 99 lbs and is now 5'2. WOW. He was 39 inches tall and weighed 39 lbs. when we met in September 03. Holy cow!
i better get back outside and enjoy this beautiful day. the 3 kids are all in the sandbox(i have lexi today, her mom is so sick!!) just wanted to update for the peeps who understand all the crazy jargon & like to hear about the weird crap that goes on here.
happy spring!
He weighs 99 lbs and is now 5'2. WOW. He was 39 inches tall and weighed 39 lbs. when we met in September 03. Holy cow!
i better get back outside and enjoy this beautiful day. the 3 kids are all in the sandbox(i have lexi today, her mom is so sick!!) just wanted to update for the peeps who understand all the crazy jargon & like to hear about the weird crap that goes on here.
happy spring!
4 comments:
Hey, wanted to say hello and say that I am hoping and praying that you get the right combo of meds right away for Jackson,....there is so much to learn, we can't live in fear but it is scarey when numbers aren't where we need them. Take care, Jody in MN
I hope everything works out for you.
I will keep you in my prayers.
It's amazing how much he's grown. He's going to do great on the new meds.
You just made me aware of how much I do not know. I hope the new med works well and they can get it working without sending him emotions to the moon. Oh...he is almost exactly the same size as Taz.
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