My 13 yr old daughter has incessent, recurrnet pericarditis and a grade 1-2 heart mumur, and prolonged QTc above 450 or more on echos.
She is on ibuprofen, and colchicine and her pericarditis is "controlled"
My main question is this, should she be allowed to ride any type of amusement park rides, such as roller coasters... What should she not be allowed to do in her situation? Any help, input, would be greatly appreciated. I worry about letting her do any of that, but I hate to be restricting her for no reason.
Without evaluating your daughter, it is difficult to assess her risk. I can say that with recurrent pericarditis, it is probably better not to cause any specific cardiac stressors until the pericarditis has resolved. We usually have these kids rest, as we are not sure why there is persistent inflammation occurring but we believe that further activity (using the model of acute rheumatic fever) may worsen the inflammation. Your cardiologist should be able to discuss this with you further.
With regard to her QTc measurement, this may need further evaluation. A QTc of 0.45 is likely normal for her, especially if this is the computer-generated measurement. I would recommend that your cardiologist hand measure this to ensure that this is a correct assessment. As well, we do not make a diagnosis of prolonged QT syndrome with a single QTc measurement and otherwise no other personal or family history or without finding other specific abnormalities in the ECG tracing, unless the QTc is severely prolonged (e.g. >0.50).
Thank you for that information. I have asked her cardiologist this question about amusement park rides and he said he wasn't sure, but didn't see a reason why not... I am thinking about finding another cardiologist because the one she see's is not familiar with recurrent pericarditis. Her disease never goes away unless she takes high doses of ibuprofen each day. When we tried to wean her last year, she got down to 1200mg ibuprofen per day and the inflamation came back, her sed. rate went back up, etc.
Her QTc measurement has been done every month for the first year 1/2 of her disease and it is alway 450mms or above. It has been as high as 480. Is this possibly related to her pericarditis? Her cardiologist wants to evaluate this further but does not want to do a stress test on her until her pericarditis is gone.
Any additional information, help would be so much appreciated. I do tons of research on her conditions and am still learning. Thank you so very much!
Recurrent pericarditis can be a difficult problem. It is good that she is on colchicine, as this is a reasonable approach. However, it may be that she requires either a pericardial window (opening a hole in the pericardium to allow for drainage into the abdomen) or a pericardiectomy (removal of the pericardium). Certainly, considering that this is a chronic condition for her, it is not unreasonable to have a second opinion.
Regarding her QTc interval, again it is important to ensure that these are real and not just the machine measurements, as the ECG machine can overestimate these. Beyond that, I am not able to say much more without evaluating her specifically.
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