I've been having some anxiety about how cooperative the twins might be when it came to taking their new meds, prescribed by Dr. Swoboda. Fortunately, it's not been bad at all.
The carnitine is a clear liquid, and only 1/2 teaspoon at a time surely is manageable. And while it's no white chocolate raspberry cheesecake, it certainly tastes better than most medicines, I'd say. They put up a little protest, but both managed to consume nearly 100% of the dose.
The valproic acid comes in little capsule. Since the babies are too young to swallow it whole, we just open the capsule and sprinkle the contents into a spoonful of food. Today, I put it in their first spoonful of oatmeal. And they ate it (suckers!). Just like that, they've had their first doses of carnitine/VPA. I only hope they're as cooperative tomorrow...
It may help strengthen them, or may do nothing. Time will tell. They'll be re-evaluated in 12 months to determine whether we should continue it.
More info: http://www.fsma.org/UploadedFiles/Research/Publications/CurrentPublications/SMA-compasssumm08.2[1].pdf
I hope this works out really well for you guys - just the name alone 'valproic acid' sounds really bad. But I'm glad they took it without much protest. Hopefully there will be really good progress with this drug.
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