Pediatric Patient

Child with a Pacemaker

by Heart-Rhythm-Center.com - 2018-07-24 17:59:13

Nora's Mom:

I am sorry to hear about your child that needed a pacemaker but be reassured that the goal of a pacemaker is to help her lead a normal life. Defibrillators can be used to prevent sudden death in children and young adults, but there are issues that may be particularly salient in young patients. It is important to convey to patients that pacemakers are lifesaving tools that can help them live long and healthy lives. The patient will benefit from a “strong community of family or friends” (Dimsdale et al. 2012). Family and friends should have a keen eye for any signs of anxiety or depression and not hesitate to seek out help if they are worried about the patient. As the children grow older, they will seek out more independence and need more information and control over their medical conditions. Family and friends should encourage the patient to participate in managing his or her own health (Dimsdale et al. 2012). Along the way, it is necessary to educate important adults in the child’s life (for example, teachers, coaches, and family friends) about the pacemaker and the child’s health condition.
 

Hope this helps.

Interference

by AgentX86 - 2018-07-24 22:35:40

There is no reason to worry about things she's likely to carry for school.  Computers and such are safe.  Cell phones should be kept well away from the pacemaker site because of their relatively high power transmitter and a strong magnet in the speaker but a tablet shouldn't be a problem. 

The most important issue, IMO, is to make sure she has as normal of a childhood as possible, which means that you can't make her world about the pacemaker.  She needs the pacemaker to make her life normal.  It's up to you to make sure it is.

Hi Mom

by NiceNiecey - 2018-07-25 06:44:23

Nora is in good company here with Complete Heart Block aka Third Degree Heart Block, including me.  I’m no longer 6 years old! But there are others on this site that have children with PMs and perhaps one of them will weigh in.  Still others are now adults but have had a PM for decades, starting in childhood.

Honestly, the only thing I’d worry about with Nora at school would be getting hit by a ball in the sternum or being shoved in that spot by another kiddo (accidentally, of course!).  It hurts!!!

I keep my cell phone in the breast pocket of my winter coat right over my device and it has never bothered me.  And I’m typing right now on my iPad; no problem at all.

 The only thing I’ve ever felt weird after being near was the airport scanner (slipped up once and it wasn’t a big deal).  And recently, working in the yard with a 56 volt weed wacker, made me feel unwell.  The next time, I kept it a safer distance from my PM.

I’m sure she will do well in every area. Through the years, I’ve found that children with a serious medical problem tend to be brighter and more mature than their peers.  They’ve been exposed to a lot!  I would be a real helicopter parent in the same situation (just being honest!) but you seem to have the right attitude: helping her function without drawing attention to her condition.  Good job, Mom!

Niecey

been in Nora's shoes

by Tracey_E - 2018-07-25 09:02:26

I have CCHB but wasn't paced as a kid because that was the 70's and they didn't give kids pacers then unless it was life threatening, but I went through school with a lot of restrictions. Like you, my parents tried hard to make sure attention wasn't drawn to me and I was treated like all the other kids. Good for you for thinking this way! That's one of the best gifts you can give her. Kids don't think like adults. We don't worry about the future or get scared often or think things through. We follow the adults around us. If they seem calm and take it in stride. so do we. I never even thought my heart condition was a bad thing, just different. My parents were really good at resisting the urge to be overprotective. I didn't fully appreciate how incredibly hard that would have been, how scary things must have been for them, until I was a parent myself. I had a perfectly normal and happy childhood and I'm a happy, well adjusted adult. My parents gave me an invaluable gift.

Back to teachers. I'd be very surprised if you find any that don't take it seroiusly. They hear heart condition and are instantly and forever on alert because they don't want something to happen on their watch. Some (ok, many) are going to overreact, which is annoying when you're the kid but better than not taking it seriously. They don't really understand what our condition is or what the restrictions are so I found that they were overly conservative more often than not. Because I wasn't paced, my rate didn't go up on exertion so I wasn't allowed to exert, so my restrictions were very different than Nora's. There were things I could have probably participated in but the teachers would have me go sit down for fear it was too much. Oh how I hated that. I didn't get upset about my heart but I hated being treated differently. Kids just want to fit in. But for every time that happened? Well, I may have used it to get out of things I didn't really want to do a time or twenty.  I learned young that all I had to do was hint that something was too much and I was immediately excused, no questions asked. All clouds have silver linings and I figure it all worked out even in the end. My sister (with her normal heart who never got out of anything) called it manipulative but I'm gonna go with Niecey's assessment that we are smart :o)

The reality? The 6" rule is a precaution so if it were my kid I probably wouldn't even bother bringing it up. I'd be more concerned about it taking a direct hit, not because it'll do any damage but because it hurts when it happens. Newer pacers are much better shielded than the older ones and not much affects them. I took my ipad with magnetic cover to a check once and we tried to get it to interfere but could not. The magnet has to be both strong and right over it. I run with my ipod clipped over my pacer or bluetooth headphones. If I don't have a pocket I'll tuck my phone in my bra. I read in bed with my ipad on my chest. I've been paced 20+ years, have never been overly cautious, and have never had a problem. Very worst case, if we got too close to a magnet that's too strong then we would feel like we do when they interrogate until the magnet is moved. Feels funky but harmless. 

Finally, there's no reason to think Nora doesn't have a bright, perfectly normal future ahead of her. For me, getting the pacer was the end of the restrictions, not the beginning, because having a normal heart rate meant I could try all those things I wasn't allowed to do before. And try them I did! I'm 51 now, healthy and active with two daughters in college. My oldest does Crossfit with me and is a runner. We are currently training to do Disney's Marathon Weekend next year, that's what she wanted for college graduation. My youngest is the wild child, moved across country and is studying to be a park ranger. When I visit her, we hike, go ziplining, ride roller coasters, last year we rode an Olympic bobsled and she said something about canyoneering when I see her next month. Apparently my family does not see me as fragile. There's truly never been anything I really wanted to do that I wasn't able to do because of my heart. I don't want to paint it all rosy because there have been emotional ups and downs over the years, but the ups far far far outweigh the downs. Physically, it's only an inconvenience when I need to take a day off for appointments once a year (when I was in school, I thought that was the Best Thing Ever) and when the battery needs replaced. I'm on my 5th pacer now. I truly don't give it a thought most of the time.

Nora is blessed to have you, and she's blessed to be born in an age where they can fix her heart so she can have a healthy, active childhood. 

Thanks y'all

by Nora'sMom - 2018-07-27 11:15:54

Thank you, Niecey, Tracey and all! Nora started first grade with so much enthusiasm. She loves her teacher and being back with her friends. I can already tell that her energy has increased as she still wide awake at bedtime and wakes up about an hour earlier every morning - ready to start the day! Her resting heart rate before the pacemaker was about half the normal rate of a child her age, so I look forward to seeing her zoom around the playground.

My husband called Medtronic about the likelihood of interference, and I feel much better knowing that her PM will switch to safety mode if interference is detected, and it is well-shielded to keep it out.  Feeling great about the future. Thanks again for the comments. :-)

zoom

by Tracey_E - 2018-07-27 13:25:22

It's great to hear she's feeling good! For me, those first weeks felt like I'd been mainlining coffee. If tired all the time is all you've ever known, you cope and really don't have a clue that it isn't normal. Then when you have a normal rate for the first time ever, it's a whole new world. I hope she lets you get some rest soon lol. 

Another thought on interference. If it ever happens and causes a mode switch, it'll show up on the interrogation report so you will know the day/time it happened. A few times I did things that were borderline so I asked. Nothing ever showed up on the report, even the day I went in the generator room at the power plant. 

Stay positive! Know this is so much harder on the parents than the kids. Technology is amazing. When I was first diagnosed at Nora's age, pacemakers were new, paced at a steady rate rather than going up and down as needed, were huge, didn't last long. Now they are working on one that is the size of a grain of rice and goes in the heart, no leads needed. Another lab is trying to make one that recharges from our movements. I can't even imagine what they'll come up with by the time Nora is my age.