As a father of two boys with CPVT, which both have an ICD i find the recommendations worrying. The main objective is to setup the ICD so that only appropriate shocks are applied to the patient. This is especially important for CPVT since anxiety an pains from inappropriate therapy from the ICD will introduce VT. So ensuring that the patient is passed out, before shock therapy would lower the risk of having an ICD shock storm. The discussion should not only be whether to recommend ICDs but also how to set the different thresholds. This is especially important since the medicines betablocker and flecainid does not offer a good enough protection. Furthermore Left Cardiac Sympathetic Denervation is not a good protection either.
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As a father of two boys with CPVT, which both have an ICD i find the recommendations worrying. The main objective is to setup the ICD so that only appropriate shocks are applied to the patient. This is especially important for CPVT since anxiety an pains from inappropriate therapy from the ICD will introduce VT. So ensuring that the patient is passed out, before shock therapy would lower the risk of having an ICD shock storm. The discussion should not only be whether to recommend ICDs but also how to set the different thresholds. This is especially important since the medicines betablocker and flecainid does not offer a good enough protection. Furthermore Left Cardiac Sympathetic Denervation is not a good protection either.