Does your child get his pacer checked by telephone?

I was wondering if anyone has their childs pacer checked by telephone. I know for sure that they do that with adults, but I was wondering about kids. If so, when did they start doing that? And is it because he/she is in complete heart block and they are doing that for extra checks between appointments? We are currently at every 6mo with the EP. We will see her in April, so I'll ask about it then also. But, I was just wondering... And I was wondering how many parents of children with pacers there are out their that are on this board?

Ok, thanks!

Cindy

11 Comments

Son with a Pacemaker

by makermom - 2008-01-25 06:01:37

Hi there!!

There doesn't seem to be that many of us out there really! My son is the only child with one in our entire area. We can't get our child's pacemaker checked by phone although I believe in some cases you can. Possibly the cardiology hospital could give you some insight.

Teletrace

by uvagershwin - 2008-01-25 07:01:01

Hello! I am 13 and get Teletrace calls every 2 months I think. It only takes about 15 minutes tops. I have congenital heart block but I am not totally dependant on my PM.

Child Pacemaker Check

by Harry'sMommy - 2008-01-25 09:01:00

Hi!
Harry has his pacemaker checked by phone in-between his regular 6 month checkups with the EP, and any time we might think that something is wrong (extreme fatigue, dizzyness--it has only happened once as an "emergency", and ended up being nothing). He has done this ever since he had his pacemaker put in at 18 months of age. He does have 3rd degree heart block, but he's not pacemaker dependent--his sinus node is working 100% of the time--the impulse just doesn't get through to the AV node. I'm not sure that either of those facts have anything to do with the telephone checks, though--I had thought that telephone checks were standard for all the kids with pacers where he is seen at Cincy Children's Hospital? But I could be wrong about that . . .

Wow, there are a lot of differences!

by Harry'sMommy - 2008-01-26 11:01:27

This post & thread is so interesting . . . It really shows me how much I don't know about pacemakers in general, and how we only know our own situation, however similar it may be to someone else's.
Clichtenberg (and everyone else), I'm glad to have met you, too! It will be neat for our kids to have a place to "chat" in the future (but right now, we're working on writing his name :).
Oh, and we only live 20 minutes from Cincinnati Children's Hospital--we're inside the city highway loop-- so I don't think that's why we do the telephone checks, either. I was just under the impression that all the pacer's at Cincy Children's do it. The cardiac unit at Cincy Children's holds family events, and we went to a family campout weekend last spring, and all of the pacer kids we spoke to did the telephone checks, but of course there are many more children with pacemakers being served by Cincy than those who made it to the campout, so my impressions could be way off . . . Anyway, there's a whole office of "pacemaker" nurses (4 full-time) and a hotline for phone checks set up at the hospital. I don't know what the qualifications for doing phone checks are, then??? But now that I'm thinking about it, all of the pacer adults that I know in the Cincy area have told me that they do it, too. Maybe I should ask the pacemaker nurses next time we're in (but that won't be until June--we were just seen, so the next check is a phone check.) Anyone going in sooner?

I guess nothing is standard is it?

by clichtenberg - 2008-01-26 12:01:29

My son has had his since he was 10wks old. He has 2nd degree heart block, which occured after his ohs. I thought maybe they would have us start checking via phone after he had it for a while. But it sounds like they can do it right away. I wonder Harry'sMommy do you live far from the hospital? We are pretty close, so maybe that is why? He had his surgeries at the University of Minnesota.

Makermom- if you can believe this, my neighbors son who is 4 months older than my son has a pacemaker too. I met the family after I found out about my sons chd's. She prepared me for what was going to happen. But then my ds had to get a pacemaker. And then her ds had his 2nd surgery and ended up with a pacemaker too. We are glad to have each other, the kids will have someone to talk to that KNOWS what they are going thru. Her son doesn't do the tele checks either.

I wonder why there are so many differences?

I'm glad to meet you guys. Thank you everyone for your responses! I'm glad there are kids on here too. One day my son will be able to get on here and have other kids to talk to. I think it's great!

phone checks

by slarnerd - 2008-01-27 12:01:12

Hi Cathy! I am surprised that you don't have an ecg machine at home - especially with such a young child. Not only are they good for check-ups between office interrogations, but then you can run a transmission if your child falls and you are concerned about a lead fracture or other problem. I have run checks when my son (18 mo) has been trampled at the playground by his sister, seemed groggy, and face planted while learning to walk. It may be that they only give them if the child is 100% dependant - I don't know.

Each brand of pacer has their own system and each hospital handles monitoring differently. I see that your son has a Medtronic pacer - so he would have their ecg machine.

In our case, my son got his pacer at 2 days old and went home after a few weeks, with the ecg machine. We started doing check-ups once a month then. He was going to the office for interrogations every 6 months. At our hospital (Stanford), the ecg machine dials into the computer at Stanford so we can do it anytime of day or night, 7 days a week. Some other hospitals have a contract with a company that gives you live assistance on the phone while you do the check and they send the results to the hospital. St. Judes pacers have a different machine and contract out for the service also. When my son broke a lead, it was picked up on his ecg regular phone check in Nov (it happened in Oct) - otherwise we would not have known until his 6 month appt in Feb. The ecg trasmission let the pacer nurse know that the atrial lead was either pulled out or fractured. An xray the next day confirmed a fracture. Now we go in every 2-3 months and we have a more sophisticated phone check called Carelink that dials into Medtronic directly where the nurse can read a more detailed report. Carelink is MUCH easier to use with a squirmy toddler but they wouldn't give it to us before the lead fracture b/c it is more expensive and our insurance wouldn't cover it when ecg is good enough if all else is good. It can be challenge to do the phone checks with a young child. :)

Sterling

GET CHECKED

by MOMMA - 2008-03-10 01:03:32

MY little girl gets checked once a month over the phone . Right before school she thinks its cool and leaves the leads on all day during school . Its not hard and the operators r nice and I feel better when they tell me all looks well its that peace of mind that i like .6 months is to long to wait to see the doctor.You should ask the doctor u want it . My girl is 7 years old and we get checked every month.

Telephone checks...

by morgysmom - 2008-03-20 12:03:51

My daughter, Morgan, is fifteen, and has had a pacemaker since she was eleven days old. She has had four different devices, all Medtronic. The last device was a pacemaker / defibrillator / resyncronization device implanted almost three years ago. We have always gone to the heart clinic at Children's Hospital in Oklahoma City every six months for regular check-ups and pacer interrogations. Then, halfway between those visits we do the telephone thing. We do the telephone checks for a couple of reasons: 1) We live about 3 hrs. from OKC. 2) Morgan has a couple of heart issues: Bradycardia and Cardiomyopathy, so they keep a pretty close watch on her pacemaker/defibrillators functioning. She has always been very physically active and tends to run the batteries down more quickly than anticipated. Also, her defibrillator did fire last summer one day after her 15th birthday. I just found this site today, so I'm pretty excited to find other parents & kiddos with an understanding of what it's like going through similar challenges

telephone checks

by PacerMom - 2008-04-07 02:04:07

Esther has had her pacer since she was six months old. She came out of OHS in complete heart block. Ten days post surgery she was scheduled to have the pacer implanted but she started to pace on her own. We brought her home and after two weeks her heart rate started to drop and become irregular. One night it went down to 39 and we took her to the ER. The EKG showed complete heartblock with a heart rate of 40. We were mediflighted back to Doernbecker which is 400 miles from us. The pacer was implanted and she is like a new baby. That was 8 months ago. We have her checked by phone every three months.

telephone checks

by kathycam - 2008-04-09 10:04:57

My son is 28 years old and was born with complete heart block. He has had a pacemaker since he was 4 hours old. We started doing the telephone pacemaker checks when he was around 4 years old and he still does them over the phone. He's going to have a replacement pacemaker implanted on Aprill 22, 2008 as this one is starting to slow down.

I wish you the best. I'm sure your child will do just fine and will live a very normal life.

Telephone Checks

by Laurel - 2008-07-09 02:07:14

My daughter now 5 was born with a complete heart block. She got her pace maker implanted the day after she was born. She's on her 2nd Medtronic pacemaker. Raytel Cardiac does her monitoring every two months.

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