I was wondering if you could explain exactly how the ILR works. my now 6 year old son has one due to his Hr going anywhere from mid 40's (where he passed out once and other times has come close to passing out as you can without passing out) and his Hr going over 200 (even at rest) and he gets very tired with both.I was told that is normal as long as he isn't symptomatic. they put an ILR in and it shows that he has FVT(231bpm or more) it says he did meet the criteria for FVT, however the sensing of t-waves it isn't accurate. even though in the note it states good ventricular sensing. I don't understand this. at this one episode he was running around a very tiny gym for about 45 seconds grabbed his left side of his chest and said his heart feels tight and is pounding. I can't take his pulse as there is a "pause" in it, even the pediatric nurse at his doctors has to get it with a stethoscope and listen to his heart. he also just turns blue for no reason, lips and around his face is pale and greyish sometime it last for a short time and others it is hours. I now have my SAT machine. he does have a small PFO with intermittent bi-directional shutting. he also has a cpm;ete RBBB, mild infundibular stenosis (peak gradient, small pectus EX.. he did have a large VSD repair as well as the PFO stitched, which wasn't successful, and a PDA ligation at 3 months.
It sounds like there are a few things going on here. First of all, your son has a history of a surgical repair of a ventricular septal defect (VSD), ligation of a patent ductus arteriosus (PDA), and incomplete closure of a patent foramen ovale (PFO). He most likely has right bundle branch block (RBBB) secondary to the VSD repair. I am concerned about him having bidirectional shunting at the level of his PFO. Bidirectional shunting means that his he has both left to right (normal) as well as right to left (likely not normal) blood flow there. The right to left flow suggests that the pressure on the right side of the heart may be elevated.
The second issue is some sort of an arrhythmia. He had an implantable loop recorder (ILR) placed to capture his heart rate, because there was apparently some difficulty in using routine cardiac monitoring to assess for evidence of arrhythmias. The ILR works in two ways: it automatically captures and records heart rates below or above certain programmed thresholds. It can also manually capture an “event” if you use the external activator at the time he is symptomatic. It is then “interrogated” like a pacemaker, so that all events can be viewed. Certainly, for a 6-year old, a heart rate >230, especially at rest, is likely to be abnormal, such as supraventricular tachycardia (SVT), so this should be further evaluated as needed and treated. With a history of structural cardiac disease, he is certainly at greater risk to have SVT. It is also possible for him to have had damage to his sinus node, the natural pacemaker of the heart, which can cause his heart rate to go very slowly. There is a condition called “brady-tachy” syndrome, in which the heart rate slows down, then goes quite fast; this can indicate that the sinus node is damaged. This may be just what your son is doing, depending on the history and ILR findings.
Finally, in regards to a second opinion, if you are not getting the answers that you feel that you should be getting from your cardiologist, you should seek a second opinion. Part of that evaluation includes the review of past medical records as well as consideration of any further evaluation, as appropriate. If you forward the records ahead of time, they can certainly be reviewed prior to his visit. I wouldn’t worry about wasting anyone’s time, especially since it sounds like there is definitely something not normal with your son, including his lack of exercise tolerance, his color changes, his almost-passing out, and his heart rate range.
sorry I had to finish on a separate place. here is the rest
as far as him runing, he can usually run around for 2 minutes at the very max with out getting really tired and he starts out really good and is able to keep up with peers of his own age but then has to take a break for a minute or more. cardiologist says"well there has to be someone in the group that doesn't have the stamina? i am very concerned. I made a video of him running and grabbing at his chest and his cardioloigst refuses to look at it.
my question is why is the ILR saying 2 different things he does meet the requirement for FVT but the over sensing of the t-waves maybe be causing it to say that
I need a 2nd opinion but as a doctor how would you feel if I brought my son in to see you for a second opinion? would you review his records prior to my arrival, I have copies of his whole life just about. every specialist and things I really think I need a second opinion for him but hate wasting my time and doctors time if it isn't worth it.is this fair to his cardiologist. I have had 3 pulmonologist and 2 ent say his issues are cardiac and cardiac doctor says no it isn't
Thank yo so much for any help you may be of
this morning around 12:05, he woke up and complained that his chest from center to the left side REALLY hurt him. i did a recording of his implant, i also did a sat on him they were 90-91 Hr was 60. he was sweaty and grunting. this lasted 1 hour. i didn't take him to our ER as it isn't really equipped for peds with medical issues. besides by the time i would have gotten him there it would have been over with and it would have been a wasted time.
he was restless the rest of the night. i am worried about him. his cardiologist seems to give me the impression that when i bring him in it is a waste of time as this is his asthma
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