I have been to the hospital three times in the last month. We have had an Echo (actually 2), 1-EKG, 1-EEG, and all kinds of blood work ups. Everything is showing normal. However, she continues to have blue/purple lips, modeling in her legs and hands (most noticable after she runs around a little and first thing in the morning), and she is sleeping more than before. It seems to me like she is not getting the circulation she needs to run her body. While we were in the hospital I noticed that her heart rate (while sleeping) was staying in the 140 - 160's and above. I am not sure what the normal rate is for a 12 month old but that just seems a little high for a resting heart rate. Do you think this is something that she will grow out of? Is it possible that she could have some small hole in her heart that does not allow her to pump enough blood to the rest of her body? Also, we did not have any problems with color changes until last month and I know that when you are cold your color tend to change but I had raised the heating level in my home before I ever took her in and she is not getting any better. If anything she is having these "episodes" more and more. I am not sure what to do. They are supposed to call me to talk to the cardiologist sometime this week and they mentioned putting her on an "event monitor". What else should I do? I also understand this can be totally benign but my gut is telling me otherwise. It is almost like she is doing something that I just can't pin-point or describe to the doctor. Oh, I have noticed that her tounge is blue and inside her lips, definately in the morning but these episodes are starting to happen even later in the day and not just at home but at daycare and other places. The doctors have informed me that they know something is going on but they are not sure what. I would like to help them figure it out. After all, I know my daughter better than they will ever know her and perhaps there is something I am missing or something I can't quite put into words yet. Can you think of anything that maybe I am not seeing or realizing? I think they have done almost every blood test in the book but what tests should I be most concerned about? Is there anything else you can think of?
Just as a little more history, while I was pregnant with her I was diagnosed as hyperthyroid and before the PTU took effect they had me on Propanalol to slow my heart down. It is my understanding that this should have nothing to do with her now. On her dad's side there is a valve problem (but the echo was good) and there are no problems on either side with seizures or anything else with the heart. While I was pregnant I also took the AFP Test which came back with the possiblility of the trisemony 18? (downs syndrome-which she does not have) but could this effect her heart in any way or even her circulation? I know that test is not reliable but I just thought I would ask.
Thanks for the help.