My 8 year old daughter had a VSD/PFO repair when she was 3 years old and has been followed up yearly with a cardiologist. In Sept. 2008 we were told she had a "somewhat" dilated aorta. Then when we came back in September 2009 her ascending aorta z score had increased from 2.97 to a z score of 5.17. She was put on Lisinopril and exercise restriction. We were sent to a Genetics Specialist (again-went in 2004 for ? Marfans) for a work up for Loeys Dietz syndrome. The genetic test came back negative and the MRA showed no tortuosity or any other dilatation except her aorta. She does not fit into any other connective tissue disorder at this point in time although she has many connective tissue markers.(She was adopted and we have no family history) We had an cardiac echo done in September and an cardiac MRA done in November that did not show any change in measurements between the two. We were told to come back in a year for another exam and MRA. I questioned this as being too long. I was concerned that if her aorta increased in the next year as much as it did the year before it could rupture. So they told me I could come back in 6 months. Am I crazy- how can you tell in a 2 month period if the growth of her aorta has slowed down-when they don't even know what is causing it? Am I correct in assuming that a z score of 5.17 is serious? I don't want to be paranoid but it is my child.
Any thoughts/ recommendations?
My 10 y.o. son had his VSD repaired at age 4 yrs and 11 months and at his checkup last May(2009) it was noted that his aortic root was slightly dilated.Eric was sent back to Genetics to be tested for Loeys-Dietz b/c of the new cardiac issue combined with his other medical issues.His test came back negative too..
His cardiologist will be following up with us every 6 months for a echo until he transfer to an adult cardio doc or he has surgery..
At this point my son only has a minor dilation(under 3cm) but since he has been going through some growth sputs(finally) we do the 6 months follow-up echoes,b/p checks and Eric started to keep a check on his salt intake as high b/p does run in our families..
As for the 5.17,I too would be concerned too as we were told that once Eric's dilation reached 5.0 we would be looking at surgery..But every case is different..I would definitely ask her doc(s) when they normally do repair..And if you don't feel comfortable get a 2nd opinon..Keep us updated on how your daughter is doing..(((HUGS)))
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