I have a daughter about to turn 5. She was born with a VSD and a bicuspid aortic valve. Her VSD was surgically closed at 1 y.o and is fine, but her valve has consistently been dilating and moderately leaking. She is being seen every six months, with her last visit in May.
I have noticed in the past couple of months that she is having a lot of transient chest pain. For example, she will be jumping on the trampoline and a few minutes later stop out of breath and come to me and say her "belly" hurts (pointing to her chest). She'll sit next to me for a few minutes and then pop up totally fine. Or she will be riding her bicycle up the hill at our house and do the same thing. Her chest hurts for a few minutes and then she's back to riding her bicycle/stopping/riding/stopping.
Yesterday we were taking a walk and three of her sisters starting running, so she went to follow. She made it one block and she was keeled over---she looked very pale, was breathing heavily, her chest hurt and she actually asked me to pick her up and carry her. I carried her another block and then she wanted to down to re-chase after her sisters. She proceeded to run/stop-gasping for breath/run the rest of the way home, and then laid down on the couch.
She is on catopril (sp?), but otherwise is allowed to self-restrict activities. My question for is--- if this was your patient, would you want a call from the parents? I know her cardiologist is extremely busy and there are a lot of kids with far more serious issues than my daughter. I don't want to bother him by being the overworried parent if this is overwhelming benign in nature.
Unfortunately, I cannot tell what the cause of the chest pain is in your daughter without getting more history. I typically am more concerned about chest pain with activity, even if it is brief. Since this sounds like it has been exclusively with activity, it would be appropriate to discuss this with your cardiologist, who knows your daughter’s cardiac status much better than I. There is certainly a very good chance that it is benign, as the majority of pediatric chest pain is, but this history is somewhat more worrisome at this point.
Thank for your input. Can I ask what they might do to investigate this beyond the typical EKG/echo, or will they just do the EKG/echo? Her last echo report summary from May says that she has a "moderately enlarged LV (z score 3.2), mildly enlarged LA (z score 2.4), mildly dilated aortic root, and moderate aortic regurgitation, EF and FS normal." It was done just 3 months ago so I don't know if doing another one is helpful?
Also--- would it be relevant to share her changing sleeping patterns? She has been feeling chest pain with activity consistently since June. I can't exactly pinpoint a date because it's been kind of gradual, but she's also been sleeping a lot more than typical for her. She gave up napping at 2, and now has been falling asleep every afternoon and will stay that way for 1-2 hours if I let her and still go bed at normal time. She also used to get up at 5 am, and now is sleeping consistently to 7:00-7:30 am.
I know this is a general forum so I don't expect you to be able to tell me "why" all this is happening, but I am just wondering if this could be seen as relevant to tell her cardiologist when I call? I don't want to be sharing things that don't/wouldn't be pertinent--- I know the obvious stuff (like I'm not going to share every time she's stubbed her toe!), but some of these things feel less certain to me and I don't know whether they could be potentially be useful information or not.
Thank so much for taking the time to be willing to answer questions.
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