Good morning My son has Aortic root dilation of 3.8cm.
He has a school residential trip and the activities includes zip wire, trampolining, buggy racing. Do you think its OK for him to partake in these from your experience. He is on no medication and has had only one episode of symptoms last summer. Thanks for any advice. I have contacted his consultant but no reply yet.
His consultant is the best source of information. I don't think any of us would feel qualified to give you a safe answer. Can you try ringing his/her secretary? Otherwise the BHF nurses might be able to give you guidance.
Thank you. I will try them again
Hi Brenda,
Have you managed to get any further towards finding out about any genetic condition?
You give a size measurement which is not quite the way a professional would assess his likely risk: 'z-Scores' which take account of the child's height and weight are preferred - the Marfan Foundation has a calculator here: marfan.org/dx/zscore-children/
In the last year, the UK Marfan Trust has broadened its remit towards Loeys-Dietz syndromes and I live in hope that they'll go even further in time. They do have some materials about sports and exercise and I feel that the more people ask them for help, the more likely they will be, to open up! marfantrust.org is the website, anyhow!
There is sports cardiology guidance, geared towards competitive sports, published in 2015, which is here: ahajournals.org/doi/10.1161...
There is also a (technical) review article published last year, which is here: ncbi.nlm.nih.gov/pmc/articl...
Hope this is helpful - and all the best to him and to you, in navigating the system. The main thing is to encourage and support him to do whatever he enjoys, as far as possible, and not to exclude him from things without very solid reasons to do so.
Kind regards,
Julian
By the way, remembering that one of your son's diagnoses is hypertrophic cardiomyopathy, there's some new sports cardiology research on that condition, which is good news, for once!
It really does look as if exercise restrictions for people with that diagnosis are unnecessary, so you and your son should not worry on that particular score.
Here's the reference: medscape.com/viewarticle/98...
Hi JulianM, I spoke to the Cardiology nurse who was in regards to his HCM felt there were no restrictions. However the nurse wants to speak to his consultant regarding his Aortic Root Dilation and the activities I mentioned. Thanks JulianM there is so much to consider now it can get quite overwhelming. If I'm honest I expected the nurse to say everything is OK he should go have fun, it kinda of hit home again that he has a serious condition.
I feel for you, and your son, on this one. I do think genetic testing is one way to find out more about how much risk there really is, or is not. In my own case, having ruled out all the known syndromes, gained evidence that the size is stable, and found a treatment (irbesartan) that might be helpful and is clearly not doing me any harm, I'm definitely getting a little more relaxed about my risk level: I hope you and your son can move forwards in a similar way. But it does all take time, and we only have one life to live in the meantime.
He has had genetic testing done and I really hoped they found something but unfortunately they found no genetic changes associated with the Aortopathy or connective tissue disease. So it's a case of monitoring.100% right we only have one life and I intended he lives it fully and in his words living my best life. Thank you 😊 have a good evening JulianM
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