The Metabolic Geneticist says that though Aidan's testing showed some highs and lows they weren't within the abnormal range. This was the 1st Tier of testing, which means he tested for treatable forms of metabolic abnormalities. Jacen's test results were missing... which didn't bother the geneticist because he said there was no way he could have been tested for what he suspects is going on. PCMC is the closest hospital that tests it. So he ordered the tests and we'll wait for those results.
So they've moved into the 2nd Tier of testing, which involves just more blood and urine work for both Aidan and Jacen. But they strongly suggested Tier 3 first. This would involve spinal taps for both boys and depending on the result, possibly for Damon too. I'm concerned about sending Aidan into a downward spiral with a spinal tap. My own experience with them is an extreme, and I don't have LGS. So I don't have positive feelings about the test to begin with. At first I was thinking, "well, this doesn't sound worth it, if what they are testing for isn't even treatable." But if it helps in another aspect, I may be willing.
Much thought and prayers must go into this decision.
We left with orders for a bunch more testing, and a sense of how they obviously believe this really does involve a metabolic abnormality. Which feels like an about-face from the insistence it was my blood clotting from previous physicians.
All I know for sure right now is, I seriously need some chocolate.
So they've moved into the 2nd Tier of testing, which involves just more blood and urine work for both Aidan and Jacen. But they strongly suggested Tier 3 first. This would involve spinal taps for both boys and depending on the result, possibly for Damon too. I'm concerned about sending Aidan into a downward spiral with a spinal tap. My own experience with them is an extreme, and I don't have LGS. So I don't have positive feelings about the test to begin with. At first I was thinking, "well, this doesn't sound worth it, if what they are testing for isn't even treatable." But if it helps in another aspect, I may be willing.
Much thought and prayers must go into this decision.
We left with orders for a bunch more testing, and a sense of how they obviously believe this really does involve a metabolic abnormality. Which feels like an about-face from the insistence it was my blood clotting from previous physicians.
All I know for sure right now is, I seriously need some chocolate.
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