can anyone give me any advice???

Hi, My 9 yr old son has had his pacemaker since he was 2, His consultant has decided he leads are now becoming short and will need his pacemaker either taken out or replaced. because he was so young and small at age 2 they had to fit him with a small pacemaker that could not tell us any information weather he relys on it or not. His consultant believes some children grow out of heart problems. Which would be nice. They have now decided to turn his pacemaker down from 60 to 45, Which i am fine with as i know his pacemaker will still kick in if he needs it. Before he had his pacemaker fitted he would collapse and he did when he first had his pacemaker as it was set at 40. His consultant is very good for everything he has done but we try to ask for information but don't get alot of answers so i was wondering if any of you could help. could anyone tell me the effects or signs i would see if my son was having problems as i was expecting him to collapse like he used to but the nurses told me that now he is older he wouldn't???? Plus when you first have a pacemaker turned down do you feel any different???? My son seemed to walk around as if he was drunk and not all there. and complaining of headaches. I know i sound quite stupid but i don't know what my son has ever gone through as he was too young to tell me.
Hope someone can help Dannii

2 Comments

May help

by Hot Heart - 2009-07-30 07:07:38

Hi there I can only relate my experiences that before I got my pm it appears that my heart rate may have been very slow for years, possibly all my life. My symptoms were always being cold, especially my feet, even after doing exercise, and especially in bed I could never get warm, always had hot water bottles as a kid and didnt have the capacity to get warm on my own, ringing in my ears and my lips often used to go blue. As a teenager I often used to go dizzy, especially if standing in queues or standing still for a long time. Never had any pain, just felt whoozy.

Hope this helps a bit, good luck

HH

Trying To Help

by SMITTY - 2009-07-30 10:07:52

Hello Dannii,

My answer to your question about your son is a lot depends on how often the PM is helping his heart beat and what his heart rate would be without help from the pacemakers. If the pacemaker helps out a small percentage of the time and he generally feels okay I would think the most that would happen if the low setting is in the mid-40s, is that he would tire more easily when his heart rate was being regulated by the PM. In other words if his heart rate dropped to the low set point and stayed there for some amount of time he may get tired and even possibly have some minor chest pain.

But this at best, is all speculation as everything revolves around why he got the pacemaker to start with and how often the pacemaker assists his heart beat, how good is his overall heart function, etc. These are questions only his doctor can answer. As for the passing out that was happening when he got the PM I don't think that is likely with a low set point of 45, but again the real answer to that depends on his overall heart condition which is something his doctor knows.

There are lots of things a doctor must take into consideration before lowering the set point on a pacemaker so what happened to me when mine has been lowered may not be applicable to your son. But the low setting on mine started at 80, some months later that was changed to 60 because I was complaining of discomfort from having a heart rate so high. Prior to the pacemaker I had lived with a heart rate of 55 to 65 for some 30 to 40 years. I was completely happy with the 60, but for reasons I don't know the settings were moved up to 70 some months later. I got along fine with the 70 setting.

But problems with the pacemaker (it was shocking me) caused another doctor to lower the set point to 40. That one was too low and I had some minor chest pain and a very noticeable drop in my energy level. Being 75 at the time (5 years ago) I needed all the help I could get to keep my energy level as high as possible. But other than chest pain (which was always very short lived) and the drop in my energy level I had no problems. When this low set point didn't solve the shocking problem the low set point was increased back to 70 and a different solution to the shocking problem was recommended. It worked.

I got along fine with that setting of 70 for about 2.5 years. The out of the blue in Feb. '07 the pacemaker could no longer maintain a heart rate of 70 at least half the time. My heart rate would drop as low as 45 BPM. Over the coming 2 years I think they tried about everything but painting my body purple to come up with a fix. Nothing worked. Yesterday I got what I hope was a fix by increasing my low set point to 80 and restarting the rate response. Time will tell and that is another story for another time.

Finally, I don't think there are any absolutes when it comes to pacemakers. We pay our money and we take our chances. In your case the problem is compounded by the fact you will have to determine the severity of a problem from the description of a nine year old. Their perception of what is going one can be so very different from that of an adult. I know this because we have a son, now 56 years old that has a congenital heart problem that was diagnosed when he was about 10 years old. I recall very well the trials and tribulations we experienced trying to sort out what was gong on with him. This was a big problem because he tried to play-down his problems because they interfered with his outdoor activities.

I wish your son the best.

Smitty

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