okay some of you know that my now 5 year old has been having some experience with a very low heart rate and being tired at the same time.
they are still not going to put a pacemaker in him and feel he isn't quite there yet, however after writing a very STRONG worded letter to his primary cardiologist since I honestly felt that he wasn't listening to me, his office called me yesterday and wants to meet with me AGAIN about my concerns. the cardiologist himself called and said that he sent my note down to Boston childrens hospital where he had his open heart surgerry and an EP study done, they want to do another test on him
My question is and this is about the test. has anyone had their child have an implantable device to keep track of their heart rate? this is like a holter monitor but it last up to 2 years (the old ones used to go up to 18 months.) can anyone tell me from their experience what it was like for the wee one. I did for get to ask about how many times do i have to call it in if he isn't symptomatic.
Michelle......are you sure they aren't going to implant a pacemaker??? Pacemakers are capable of keeping track of the heart rates. Good for you on fighting for him!!! Maybe now they will start listening.
I am positive that it is not going to be a pacemaker.I know that a pacemaker does this to your heart, but with a pacemaker it is for life this is for only two years or less. it won't prevent his HR from going to high or too low. i guess the way the doctor here described it was it is like a built in EKG it will save the information if he goes too high or too low if I don't record it myself.
he according to his primary cardiologist qualifies for a pacemaker but the other doctors don't want to put one in yet.
I know this is going to sound awful of me but I hope it shows something sooner then later so he can get to know what a normal 5 year oold can be.
You don't sound awful, Michelle, I have been in that position with my own daughter. I actually remember when she was little, and I questioned something that the doctors wouldn'r believe me, I'd always say: " Well, it will get worse before it gets better." In the long run, the doctors started to listen to what I was saying. The worse part is they would say: " She already has enough problems, why do you want to give her another problem?!!" I use to always think: "If they figure out what this problem is, we'll be able to find a treatment for it" Sometimes, I thought the doctors didn't understand that. When my daughter was going through her rhuematoid arthritis, it took 2 years for them to diagnose that; we were living with it. When they finally told me she had JRA, I wanted to kiss the pediatrican because then I knew we could deal with her problems. I am so happy for you at this point!! Keep in touch!
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