My 14 yr old has been diagnosed 4 months ago on cardiac mri to have dilated heart - all atria and ventricles especially R side and especially RV and especially inferior part of R ventricle. His height 172cm and weight 55 kg and yet the sizes of each atria and ventricles are outside adult range of all chambers. We were told they did not know if we could give him coenzyme Q10 in case he has heart biopsy in a few months - we were told it may alter results. The cardiologist said 1 month ago that he would phone metabolic lab to see if coenzyme q10 given to him could alter biopsy results even if he stopped it some weeks prior but has not had time so does not know if he can try this. he is not on any meds and I want to help him as often dizzy and gets tired if does any walking
He has had bad unconscious collapses for 4 years. I resuscitated him with 10 minutes of artificial respiration before he took 1 breath in 2005 - that 2 other people saw too- then only intermittent breathing and initially had no pulse for 90 seconds too. He was only rousable for 4 hours after.
He had 3 bad collapses in 2008 and head injuries due falls when goes white and eyes roll up then dilated pupils and no response or pulse or any breath for at least 40 seconds and then 4 hours rousable and nort able to go to school much due dizzy. he used to have low pulse sometimes 42 to in 60 when aged 11 but now has heartrate 102 to 107 and BP 76/42 while resting. they do not know cause and has not had any invasive investigations. His sister has ehlers -danlos and his brother has heartblock, wandering atrial pacemaker and leaking 2 jets bicuspid aortic valve after possible rheumatic fever with weakness, pains in joints and peeling hands. his mother has pacemaker for recurrent asystoles and episodes of VT and VF and his father has had AF since in 40s. My 14 yr old boy was noticed to have pectus excavatum since birth and slightly dilated proximal aorta since first echocardiogram in 2005 but aorta then narrowed so went from 2.89 to 3.1 to 3.4 to 2.9 but still slightly dilated. he does not have epilepsy. any ideas?
I don't know where you live (what country) so I'm not sure how your doctors do things or what kind of equipment they have available to them. Your son, with this kind of history is in trouble. He needs to have an EP Study done on the electrical systems of the heart. I cannot imagine ANY doctor allowing all of this going on, unless they have written him off, in which case he should be evaluated for transplant. Get him to a GOOD doctor!!
My 14 yr old son is in A.ustralia (I do not know if previous email got thru). I am family doctor but maybe i was not taken notice by cardiologists here regarding his serious history as I am a female doctor. We have been trying to get him seen in larger capital city at National Cardiomyopathy Centre for children in melbourne but were told that because he saw another doctor there 4 years ago who diagnosed 'faint' with history of 10 minutes mouth to mouth after collapse before first breath and 90 seconds of no pulse- they said he is not allowed to come there! Where in USA is a place I might be able to take him? I used to live for 2 years in Ohio when a child. I am very worried about my son and do not think 'interdepartmental politics' should prevent my son from being properly assessed. and given best chance for living . thankyou for replying
Also could you please tell me how to do the 'ask an expert' as I cannot understand how to do this so to ask a cardiologist in USA regarding possible diagnosis seeing R side is more dilated and especially RV and inferior part of R ventricle. his sister has ehlers-danlos classic on clinical diagnosis but i have pacemaker (and was not believed about my collapses until did not stop for 3 days = recurrent asystoles) but was put under cardiologist who had misdiagnosed me and my ECGs etc went missing - i have had bad collapses and respiratory arrests for 3 minutes recurrently while patralysed while I could feel fast squeezing in my chest - this was also documented by people with me who pointed to VF and who also documented they heard cardiologist saying VT was on my pacemaker download. I only have ordinary pacemaker that does not cover Vt or VF but my son matters much more than me as he also has dilation of each atria and ventricle. i am trying to save his life but am not getting much assistance yet in Australia as no EPS and no treatment and no referral to national specialists and instead have cardiologist who says he does not think anyone in Australia will find cause or recommend what treatment. After my prtner and I were shown couplets and a triplet on his ex-ECG and I confirmed that the next day - I was told he had changed his mind and only single ventricular ectopics though he was sure previously that it was more than that. please give me some ideas to assist my son
Here in the USA we have several places that you could take your son: Texas Children's Hospital in Houston, Cleveland Clinic in Ohio, University Of Michigan (Motts Children's Hospital) in Ann Arbor, Michigan, Mayo Clinic are just a few places you could look into. If everything that you have written on here is accurate, you need to get him some help.
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