Enlarged Arotic Root

[CarmineCC]

My son has an enlarged Aortic Root 3,84 and Z score of 3.6 and is 14 years old and is 5 ' 8" tall and weighs 136 pounds (it was 3.5 cm 8 months ago and Z score was 2.6).   He is a nationally ranked runner and they have told him that he can no longer run.  My understanding is that the numbers at the 5 cm is the number that they start to recommend surgery.  Is he at risk of hurting himself if he runs or are they trying to make sure that the Aortic Root increases at a slower rate so that he does not need surgery until he is in his late 40's or early 50's.  They are recommending beta blockers.  He is coming to grips with the fact that he probably will never run again, but I would like to try and understand what his limits should be.

[CarmineCC]

Nick

Thanks he has been looked at by two doctors and they don't believe he has Marfan Syndrome but must have a connective tissue disorder, we are going to a geneticist in January for actual testing.   Since my post we have gone to a surgeon to get a different point of view and he does not believe in giving children drugs if avoidable.  We are going for an MRA within a couple of weeks to make sure that the measurements from the echo are accurate.  Thanks for your input.  Are you a doctor?

[nickppatel]

A few comments:

1.  Has your son been evaluated for Marfan Syndrome or another connective tissue disorder?  If not, he should be evaluated at a major university hospital close to you.

2.  Your doctors are right - he probably should not be running at a competitive level any longer.

3.  This is what saddens me -- beta blockers.  Doctors keep recommending beta blockers because they're ignorant.  The latest, cutting-edge research clearly demonstrates that angiotensin receptor blockers (ARBs) and ACE inhibitors are the best drugs for preventing (and even regressing) aortic enlargement, NOT BETA BLOCKERS.  Unfortunately, physicians don't keep up with the research in many cases, and this is one such case.  **High-dose** ARBs (e.g., telmisartan, valsartan) and ACE inhibitors (e.g., perindopril) have been shown to be extremely effective in halting aortic enlargement, as long as a sufficiently high dose is used (i.e., maximum FDA-approved dose).  Do the research and demand that your doctor read it and re-evaluate his/her recommendation of beta blockers, or find a doctor who actually keeps up with the latest research.  Feel free to send me a private note if you'd like, since I don't check these boards often.  

You should be aware that although millions of people use ARBs, some of these drugs have been linked to a slight increase in the risk of cancer, according to one study.  The risk in the non-ARB-using population is 6.0%, while the risk in the ARB-using population is 7.5%.

Jesus bless
Nick