The kids took their first dose of a drug called Pravastatin last night. They both have cholesterol levels near 300, which is an expected side effect of Cystinosis (pediatric patients are typically immune to high cholesterol until adolescence).
I am nervous about this drug (more so than the nine other medications Jenna & Patrick take) mainly because the long term effects of statin drugs are unknown--particularly in young kids, as there are so few who need them. The fact of the matter is, it's not much of a choice; as the alternative is heart disease.
I have asked no fewer than 5 doctors (other than Dr. Butani, the prescribing doctor who we LOVE) about our plan to start the kids on Pravastatin, and none of them are overly concerned. I will watch the kids closely for the side effects we have been warned about, and trust that we are doing the right thing.
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