12 year old son

Hi,
I just signed on. I was a little nervous about signing up for this support group. Never done anything like this but have been reading postings for a while. I have a twelve you old boy and it was also a world wind. He went to the hospital for what they thought was an asthma attack. I was then told his EKG looked like that of an 80 year old man. Anyway. He had a pacemaker put in October 30. They are telling me that the wire they left in the socket for growth has dropped and is laying on his heart. They thought they were going to have to remove everything and try again. Now they have decided that it would be to risky so they are just monitoring him. Anyway hear of this???

5 Comments

Hmm

by ElectricFrank - 2008-12-29 10:12:10

It sounds like one of those stories the docs come up with to try to explain what is going on. What does an 80 yr old man's ECG look like? It can be anywhere from looking like an athlete to looking like someone with an hour left to live.

Even a 12 year old shouldn't have grown enough since Oct to pull a lead loose. The lead is inside a vein all the way down to the heart where it stays inside. If it dislodges from the heart wall it can flop around inside the chamber. When this happens the pacing can be erratic.

If he is having any problems you may want to get a second opinion. You might also ask the doctor to arrange an appointment with the pacemaker manufacturer's representative. They are very knowledgeable should be able to tell if there is a problem.

Welcome to the group. Don't hesitate to post questions here. We are all just out to help each other.

frank

Hello

by PattiAnn237 - 2008-12-30 11:12:14

I had my pacemaker implanted when I was 11, so I know a bit of what your son is going through. As for the dropped wire, I would certainly get a second opinion, as it seems strange that the docs flip-flopped on the seriousness of it. I'm not sure where you live, but if you have access to a children's hospital its a good idea to take him there.

Did they give you a diagnosis or reason why his heart was beating the way it was??

I'm sure things are pretty confusing right now, good luck, and I wish your son the best!

more info

by rkuba - 2008-12-30 11:12:34

They said he had 2nd to 3rd degree heart block with severe PVC's. They don't know what caused it. He was on Concerta for ADHD, but they didn't really think it was that. I just keep hearing that it is very unique. You are usually born with it, get it from Lyme disease or old age. None of which fit him. The wire situation was very scary. But he did have his Pacemaker installed at Children's hospital of Philadelphia which is suppose to be the best. According to them they talked to other physicians around the U.S. that ran into this problem and people at Metronics and decided removing it was just to risky because of infection, the fact that they felt only the one nerves was large enough for what they did, and that it took them four tries to get it working in the first place. It is currently working properly. I kinda feel like we are on pins and needles though. But there really isn't anything we can do about it. I was wondering for PattiAnn did you always have issues or did it come on suddenly. My sons biggest complaint is not being able to do things. He had to give up basketball, no sledding, and this is the first year his grandmother didn't buy him a Dorney Park pass for Christmas. Obviously he is ADHD and can no longer take meds for that. Sounds trivial when it is your life but to a 12 year old boy who felt fine before all this he feels the limits aren't worth it. Although I do think most of these things he will be able to get back to in time.

HI

by OLIVIAROSE46 - 2008-12-30 11:12:49

Hi There
I too was nervous to sign up but was so pleased I did as I could finally speak to people in the same situation as me and not have to hear just what the doctors say. I'm not sure who has the 10 year old girl but they may respond soon as my little girl is 6 months and had her pacemaker fitted at 5 days so its all we have known since she was born. It is all very daunting and happens so quickly but I just remind myself that we are lucky it was spotted and treated with a pm as so many have said that once you get the pacemaker you can live a normal life, which is hopefully in time how your boy will be. I would go by how he feels and you say he is doing well, but any worries go back to your doctors but hopefully they are monitoring and will do whats best for him. Time is a great healer and enables you to catch up on everything thats happended and get your head arpund it all. If someonme had said my little girl would be like she is now at 6 months which is a happy healthy baby i wouldn't of beleived them, but she is and I take each day as it comes.
I wish you all the best, let me know how he gets on
Launa

CHOP

by PattiAnn237 - 2008-12-31 09:12:23

I have been a patient at CHOP myself (in fact I have an appointment there today!), and it is a GREAT hospital, so I'm sure he is getting great care.

When I was 9 I was diagnosed with sick sinus syndrome. A condition that rarely occurs in people under the age of 60. For years docs had no idea what had caused it. An ablation when I was 18 revealed that my condition was most likely caused by a virus that had settled itself, unknowingly, in my heart.

I'm 28 now, and though the road to recovery was long, after a pacemaker, years of meds, and two ablations, I am now symptom-free, and on no medication.

It was always really hard in the begining, and in fact it took a solid two years for docs to understand everything that was going on in my heart.

The most important thing to do is to make your sons life not about a heart problem, focus on what he can do, and not what he can't. I was rarely scared as a kid, in fact I felt lucky, because at CHOP I always saw kids around me who were so much worse off. As an adult, thinking back, it scares me to death what I went through, but as a kid, I just wanted to play and have fun.

Again I wish your son the best, and I know what I tough and scary time this is. You can email me as well if you have any questions I can help with
pattiann237@yahoo.com

-Patti

You know you're wired when...

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.