Monday, August 11, 2008

Quick Robert Update

The last few days have been busy as we prepare to go to Vermont, and I deal with many of the residual issues with Robert's childcare, medical supplies, medication.  

Downtown WDC, however, is very quite.  My office is near the Capitol--leaving work today at rush hour, the streets were quiet, and there were very few pedestrians heading to the Union Station metro.  Signs of the congressional August recess during an election year.  

Robert seems to be back on his game.  We've been shifting around with suppliers trying to find the best prices and shipping fees on biotin, which is kind of pricey.  Amazon is a particularly annoying supplier of such things.  You get into a groove with a certain brand and Amazon itself being the shipper, which saves me money as I pay for the yearly shipping fee, and then Amazon stops carrying that item.  Some other supplier that wants to charge an $8 shipping fee and take 10 days to get it to you has it.

So we tried a different vitamin company.  The biotin arrived as a bottle of 5 mg capsules, but they looked sort of small compared to the other 5 mg capsules from different brands we've used in the past.  After about three weeks on this, it was clear something was not right with these vitamins--Robert was not looking as good, his movements weren't as good, and, most frightening of all, he was starting to have myoclonus again (I think I've spelled that right)--involuntary, intermittent shivering, shaky-type movements.  This, we have learned, is a sign of active brain deterioration.

We went to GNC to get new vitamins, figuring they're a long-time retail chain and have something invested in providing a good product.  His symptoms cleared up within a week.

This is a whole new territory for us: our kid needs a dietary supplement now for medical reasons, and vitamins are not really regulated much by the FDA.  Now, whether this other manufacturer mislabeled 5 mcg capsules as 5 mg capsules, or whether they just substituted other ingredients for the actual supplement, I don't know.  Or maybe the other brands had other ingredients that maximized absorption.  

I can't believe, after all this for years with the prescription drug companies and the volcanic eruptions about price differentials on drugs inside and outside the U.S., the claims that the FDA was sent from god in the U.S. to make sure our prescription drugs are what they claim to be, that we're not at the mercy of an unregulated supplement industry.

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