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From: lbruns3@home.com
I'm reading al of these experiences and having trouble lifting my jaw off of the floor! These are so similar to the experiences that we have been having. I have four children, three of which have had these episodes. The common thread was always a sharp, unexpected pain. Not a scraped knee, but the funny bone type of hurt. My son and his twin sister are the most severe. His heart rate has dropped to 6 beats per minute, hers has dropped to 40 bpm. We think that their hearts have actually stopped but that has not been documented like the other episodes. This all started for us about four years ago with the twins, even longer with their older sister. But she seems to have overcome this. She is now 12 and has been free from these events for about four or five years. My son has been given the tilt test BUT DID NOT PASS OUT. This was very frusterating for me because he has had so many episodes that have put him in harms way. I was diagnosed w/epilepsy as a child and these episodes sound very similar to what I also experienced up to and including having cold extremities. Never the bowel problem though. My heart rate bottomed out a few years ago in the hospital in the delivery room when I was in premature labor. I just took my twins to the dr today after a very scary episode w/each of them over the wkend. It seems that their episodes are becoming more frequent and more severe. I am demanding that something be done for them now, where as before, I was weak willed because like so many of you, I felt that I had so little support and obviously not enough info. Thank you all for writing. I am so afraid that my babies (eight years) will pass out because of their heart stopping and never come out of it. We have appt. w/ cardiologist in 3 days. I'm so tired of the heart monitor. It is embarrising (sp) for the twins and absolutely useless so far because unless you have an episode while you are wearing it, it doesn't detect a thing. Should we try another tilt test. I'm afraid to not medicate at this point. I feel like I have gotten more info to go to the doctors with from this site and would appreciate any advise. Thanks. Michael and Dawn-Maries Mom