18 Years of Treatment and still getting worse

[Frustrated31]

My son has had Arrhythmia issue since he was 13 years old. He has been treated at Children's Hospital of Orange and Scripts in La Jolla. He has had over 15 procedures and the last ablation put him on a Pacemaker. He has EDS ( Ehlers-Danlos syndrome) in addition which effects the Heart. His pathways keep reconnecting and it is a viscous cycle. He has seen some of the best cardiologists in California and he continues to get worse. He contracted COVID - 19 in November now he has gotten even worse and can no longer drive or work. I am searching for a cardiologist that can finally fix this issue and get my son back to being able to live a productive life. I am challenging any cardiologist to reach out if you really think that you can solve this 13 year nightmare.

[Jonp]

I have no medical experience. I only reply because you sound desperate and may not have considered Roemheld Syndrome and POTS (common with EDS). I have both, doctors seem not to understand them so, although unlikely, I thought they might have been missed in your son's case. You may also like to follow Sanjay Gupta on YouTube.

[TracyAdmin Partner ArrhythmiaAlliance]

Thank you for your recent post and for sharing your son's journey. If you would like any support or advice, then please do not hesitate to contact Arrhythmia Alliance - USA [e-mail] or call 843 415 1886. Kind regards, Tracy