My son is now 9. At age 2.5 we lost his twin brother from restrictive cardiomyopathy after heart transplant complications. Doctors at UCLA maintain it was a virus that unfortunately caused the myopathy and ruled out genetics. My 9 year twin old son is short for his age and does not seem to be growing in height like his peers in 4th grade. He does not like physical exertion. He sometimes complains of stomach aches and leg pains. Being that we lived through a surreal heart related issue with his brother we sometimes worry that there may be something genetically that will someday affect his heart. We also have concerns about traumatizing him through heart related tests (being that he will ask us why we are testing him) and insurance concerns that we have. We are concerned if we have things like echos etc... show up (if they are not necessary) that some day due to family history of losing his brother, will negatively impact coverage etc... Any professional advice on some of these concerns or recommended next steps would be appreciated.
It would be important to discuss these concerns with the pediatric cardiologists at UCLA who cared for your other child who required the heart transplant. You did not say what was the underlying diagnosis of your son who passed away after the heart transplant complications. That would be the important information to know if there is a concern for an inheritable disorder. If your primary pediatrician agrees that your 9 yr old son has issues with his growth or exercise tolerance, then it would be appropriate to consider a referral to an endocrinologist and potentially to a cardiologist. If this is a potential genetic issue, then cardiac screening tests should be covered by your insurance. Your son would not be negatively impacted from an insurance perspective just by having cardiac testing; if all is normal, then he would not be penalized.
I will contact our deceased son's cardiology team at UCLA for next steps. The underlying condition that caused my son's passing was the unexpected thickening of the arteries of the transplanted heart which they say was common over a long period of time time but uncommon for only 1 year post transplant. Frequent tests for rejection did not show rejection was occurring but he was becoming more lethargic each day. He was in the hospital while they were trying to figure out why he was not doing better and then he suddenly went into cardiac arrest. An autopsy later surprised the ULCA team that the thickening of the arteries was so severe for only being one year post transplant. Thanks for your insight about insurance also.
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