Daughter's "Dilated Sinus of Valsalva"

[faxmom]

Thank you so much for this wonderful forum. My daughter, who just turned 10, is extremely active--on a swim team and a runner. For the past 2+ months, she's complained that her "heart hurt" (an "ache and a burn" directly over her heart). She has also had a few incidents where she felt her heart was "racing" or "pounding out of her chest"(130 bpm max, however), and she has lightheadedness and pain at the same time. Not brought on with exertion or anxiety--both at school and home. Pediatrician did an exam and EKG and sent it to the Children's Heart Clinic with a referral. Met w/the cardiologist there last week, and he said the EKG/exam normal, and the racing heart not a problem, unless it goes up to 200s. Painpain was probably benign. To be safe, he ordered an echo.

Conclusions of echo:
1. The sinuses of Valsalva are diated for the patient's body surface area. Upper normal is 24 mm, and this patient's is 28 mm.
2. The main pulmonary artery appeared mildly dilated.

Dr. told us that he's not worried--just come every 1x every 2 years for echo. "No restrictions on activity, because if the aorta is going to erupt, it's going to erupt." I left rather shocked, and wished I had asked a million more questions. I'm wondering if this is a condition we should be worried about. Is there anything we can do to be sure it doesn't "erupt"? Should we limit activity? Is there anything else we should be doing? Should we get a second opinion? If this were your daughter, what would you do?Sorry for the long message, and THANK YOU in advance for your help. I really appreciate it.

[nickppatel]

What is her height & weight?

[faxmom]

I think she's about 54" tall and 62 pounds...

[nickppatel]

By the way, not all connective tissue disorders manifest with characteristic "Marfanoid" features. Does your daughter have widely spaced eyes and a split uvula? If so, she should be evaluated for Loeys Dietz syndrome. Does she have very loose, easy-bruising skin? She might be evaluated for Ehler-Danlos. It's very difficult to say without seeing her face/limbs.

[faxmom]

No, she has very normally spaced facial features and normal skin. I bruise easily, but she does not.

[nickppatel]

Your doctor's right in that 2.4 cm is the maximum for her size. 2.8 cm is way above that. She really should be evaluated by a highly qualified pediatric cardiologist. Which city/state do you live in?

[faxmom]

I'm in the Minneapolis area, so I know that I can go to Mayo Clinic in Rochester, if necessary, or even Cleveland Clinic, if that's what I need to do. However, the cardiologist we saw made it sound like such a "no big deal" thing that I thought I must be just a overly protective/worried mom. Of course, as you can tell, I wasn't willing to simply let it go for another two years, without first checking around a little. As soon as I left the office and thought about some of his comments, I thought, "What normal mom WOULDN'T get a little worried about it?!"