Dear Doctor,

I have a 4yo daughter who we recently began testing for a Mitochondrial Disease there at CCF, and during that process, an Echo and EKG were done amongst other tests.  

The Echo showed the following:
"-Dysplastic, redundent mitral valve leaflets with bileaflet mitral valve prolapse. 1+ mild regurgitation. Chordal attachments to crest of septum without cleft.
-Normal biventricular size and function."

Since this testing was part of the work up while we were there from out of state, our consult with the cardiologist was limited, and there are some questions I have before we go and see a new cardiologist here in the town we live in next week, just so I can be as informed as possible.

1) Is there any information out there on the net about MVP and children?? Did those adults that are diagnosed have this as a child also and it was just not detected till they were older and more symptomatic, or is this something not commonly seen in a child??

2) In the reading that I have done, mention is continually made of *one* leaflet being involved...is it uncommon to have both leaflets involved as in my daughters case, and does this have any significance for the future??

3) During the brief (although informative) consultation that we did have while there, there was mention of there being another abnormality (beyond the MVP and regurg) and I assume this is what they are talking about in the report when they mention the "chordal attachments", but what does this mean exactly?? Help in deciphering this one sentence will be greatly appreciated.

4) I understand that the MVP is benign, and that the regurgitation is mild and not an issue at this time, however, am wondering if the increased risk for cardiomyopathy in mitochondrial disease, puts her at any more risk for complications than someone without this diagnosis?? I realize this is somewhat like asking you to look into a crystal ball and tell me the future, but am wondering about even an increased risk being involved. Likely our cardiologist here will not have had another mitochondrial disease patient, so I'd like to give him as much information as possible.

5) Are there any symptoms to be aware of that might indicate an increase in regurgitation in between Echo's being done on her in the future?? Any outward signs at all??

6) This past week my daughter was seen at her GI doctor's office and when they checked her blood pressure the first time, the systolic was high (116 I believe) even though she was not struggling or upset about the test. Once they changed to a manual blood pressure cuff, they determined the number to be lower and within normal range. The reason I ask about this is that her readings have been high in the past, and because she does not like having her BP checked, most often they have just ignored it and gone on. At times, her being upset has seemed to explain it, but at other times she was calm. Is this anything related to the findings we have now, and is there any significance to it at all??

Thanks so much for answering these questions. I am very aware that other than the regular Echo being done and prophelactic antibiotics, at this time this is nothing to worry about and I am relieved that this was all that was found. I just want to be as informed as possible, and with so little information out there on the finding in children, getting informed has been a bit difficult.

Sincerely,
Kass, proud mom to Madison(4)