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I am always astounded to meet youths who have no heart meds. I want to share my son's success story to inspire others to be proactive in this area. With boys of my son's generation, he is 25 yrs old this coming February, there is never any improvement to boast of. Doug's heart function had fallen below the normal range by age 15yrs. Prior to this, his cardiologist told us that his heart was normal although the wall was ever thicker each year. In hindsight this is not normal but ten years ago, it wasn't until his function fell below the normal range that docs would contemplate medication...I think his EF was 47% or something like that. An ace inhibitor - lisinopril was started but his heart function continued to decline. His cardiologist commenced him on a small dose of Toprol-XL, a beta blocker, and every other month the dose was increased - aiming for a target of 180mg. He did weigh 90kg at this stage. Doug's heart function began to improve steadily after that & improved 10% to be nearly 60% by the next year. The result was so good that his dose was never increased beyond 90mg...besides he lost around 20kg for his brother's wedding over a couple of years anyway. It stayed up in the low 60's for the next 7 or 8 yrs and did not decline at all. More recently, around 23 yrs of age, my son commenced night-time vpap ventilation and soon after diurnal sip mouthpiece ventilation on his wheelchair. We were astounded with the further improvement, and even though there is a little room for error, his EF was 71% last month. The fact that my son can go to a specialist and receive news of improvement always gives him a boost mentally so that is why I am sharing this history of his cardiac care. I believe that this is one muscle where a lad can not just maintain but actually improve - in Doug's case the improvement has been over 20% in the past decade. So if current genetic treatments do not promise to help our sons' hearts, I don't see this as a big deal because we already have well documented interventions that will do that and I can vouch for being proactive with your son's heart care. Stay loved. Deb
Thanks Deb - this is most excellent to hear. Keep it up Doug!

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