I've posted here before and gained much from your valuable advice. I have one more question I hope you'll patiently answer. Some background reminder he is an ASO for TGA with aortic dilation. He is 5 and is last follow-up z-scores were Annulus and Root of 3.6 - 4.0, STJ and Ascending about 5.0 with normal isthmus at -.60. Aortic valve area is 3.4cm.
This question pertains to everyday life. "Bob" is very strong and strong willed. He totes around his tractor battery and installs it himself, he enjoys lifting our HEAVY old wooden garage door to get inside and he helps dad with the 20lb fence post pounder. He is constantly lifting and carrying things that weight a ton for a 5 year old. He's on no restrictions so I don't restrict him.
Is it OK to let him being doing these "heavy" weight bearing activities on a regular basis, they make me (and grandma) a little nervous.
I know you may suggest to talk it over with his cardiologist but even a simple question is quickly dismissed, which is why we must turn to the internet.
Also wondered what the thoughts were on wind instruments such as clarinet, trumpet etc. as they involve extreme breath holding, lung control and strong pushing as an isometric activity? (it's not as easy as it looks!)
Thank you so much and hope I'm not over-thinking it!
So a couple of things come up with this...first, there is no data that aortic root dilation IN PATIENTS WHO HAVE HAD CARDIAC SURGERY is at risk for later dissection. There has only been one study that I have seen from the Mayo Clinic that looks at this. We obviously need more data for this, though. The thought is that because there is scar tissue in and around the area, it acts to hold the tissue in place better; however, we have no proof of this.
The second thing is that we don't typically worry about dissection until the diameter gets to about 5 cm OR if there has been an increase of AT LEAST 5 mm per year. We don't worry too much about the Z-scores overall, though we do watch them.
Wtih regard to his lifting, I think that again we have no proof that this level of isometric activity is detrimental to someone like this. I would probably say that it wouldn't be a good idea for him to get involved in competitive isometric activities later on, such as football, wrestling, or weight llifting. Wind instruments also do utilize some aspect of breath-holding and pushing, but it's not nearly as much seen as if participating in competitive isometrics, as listed above. Besides, as a musician, I certainly can't offer to hold him back from that.
Finally, with regard to the response from your cardiologist: if your questions are dismissed, I would very much consider obtaining a second opinion. The care of your son occurs as part of a team, and not with a distant chief. If you are not able to get the education and information that you need from your provider, you may need to consider finding it from a provider who will be happy to work with you.
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