Some relief
Last week we met again with the metabolic pediatrician at CHOP. There was good news -- all of the latest blood tests came back normal.
Not only that, they had repeated the blood work done late last year that had shown "elevated serum lactate." And this also came back normal this time... meaning the initial result was wrong (probably due to Aaron screaming at the time).
The only problems were found in some urine samples -- she explained what they showed but I honestly don't remember. What we're left with mainly at this point is that MRI from December that showed abnormalities in the brain -- that's the clearest indicator of a disorder.
Because of the latest results, the specialist is able to rule out at this time some of the more dire, life-threatening metabolic disorders. That obviously is a huge relief. (She of course would not rule out that something serious could develop further on down the road, but for now there are no indications of this).
She believes that Aaron has some problem in the mitochondria, which are basically the power sources within cells. This sort of thing could be treatable through diet -- like vitamins or dietary supplements. Again, this would be to lessen the effects of the disorder; there is no cure.
What's next? Now she wants a test similiar to an MRI called a spectroscopy. This will require sedation. Also, we must make appointments with a geneticist at CHOP and another neurologist at CHOP who specializes in this sort of thing. After this, she may want to start Aaron on dietary supplements; this can't start soon enough as far as we're concerned.
So, months more to go on this. But for now, it seems we have a boy who doesn't burn fuel well, and who probably is developmentally delayed as a result. But at least he appears healthy beyond those delays, and for that we are thankful.
Not only that, they had repeated the blood work done late last year that had shown "elevated serum lactate." And this also came back normal this time... meaning the initial result was wrong (probably due to Aaron screaming at the time).
The only problems were found in some urine samples -- she explained what they showed but I honestly don't remember. What we're left with mainly at this point is that MRI from December that showed abnormalities in the brain -- that's the clearest indicator of a disorder.
Because of the latest results, the specialist is able to rule out at this time some of the more dire, life-threatening metabolic disorders. That obviously is a huge relief. (She of course would not rule out that something serious could develop further on down the road, but for now there are no indications of this).
She believes that Aaron has some problem in the mitochondria, which are basically the power sources within cells. This sort of thing could be treatable through diet -- like vitamins or dietary supplements. Again, this would be to lessen the effects of the disorder; there is no cure.
What's next? Now she wants a test similiar to an MRI called a spectroscopy. This will require sedation. Also, we must make appointments with a geneticist at CHOP and another neurologist at CHOP who specializes in this sort of thing. After this, she may want to start Aaron on dietary supplements; this can't start soon enough as far as we're concerned.
So, months more to go on this. But for now, it seems we have a boy who doesn't burn fuel well, and who probably is developmentally delayed as a result. But at least he appears healthy beyond those delays, and for that we are thankful.
posted by tylertoo at 8:50 AM
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