My son 14 has pectus excavatum and now has dilated cardiomyopathy of both ventricles but especially RV and especially apex, also dilated RA and also bad collapses and looks like dying. the drs here have not seen a collape but just say 'likely faints' and have not given him any meds.
He used to have slow heartrate but now always fast and low BP 76 systolic
Any ideas what could be cause or reversible metabolic or other cause?
I have a connective tissue disorder that can include pectus excavatum and heart disorders. The National Institute of Health has a free government study going on. It is at Harbor Hospital in Baltimore. They do a series of easy tests and it is free as it is a government study. I have been and the staff is wonderful. They know all the things to look for that could be unsafe. I do not know the wait time but maybe a phone call to them might possibly hurry it up. I am not a Dr but I am worried about his safety. Dr Naz at the NIH is a geneticist. She is really the best in the USA. You would get all your fears and questions answered. If you are interested then put connective tissue study in search on internet and Dr Nazli McDonnell. I would tell her about his medical care.
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