Worried mom

PM for pedis

by TBrous&Chip - 2017-05-10 06:50:08

I am not a parent of a child with a PM but did find this web site that may be helpful:

https://childrensnational.org/choose-childrens/conditions-and-treatments/heart/pacemaker-implantation-treatment

According to this article there may an option for abdominal PM placement in a pediatric patient

An Electrphysiologist opinion if he has not see one may help you in making your decision.

I wish you the best for your child and you as parents.

Children

by Pacemum - 2017-05-11 03:44:05

My daughter has had a pacemaker since being a few months old, she is now 17.

As you son is 7 they will probably use the adult placement position.   They can bury the pacemaker under a muscle  to make it less visible. 

The operation itself will be about 2 hours.  Due to your sons age he will probaly have a general anesthetic and it will take additional time to recover from the after effects of the anesthetic.   As it is your sons first pacemaker he will also probably have to spend a night in hospital just so that they can confirm everything is working as it should before he goes home.

They usually use surgical glue on the wound and the scar will fade to a fine line.  The excess glue may take some time to come off the surrounding skin.

Your son will have activity restrictions after the operation, this is to ensure that the pacemaker leads are bedded in properly.   After about 8 weeks the leads will be secure and unlikely to move.   Your son will face some sporting restrictions due to the pacemaker but their are plenty of sports that he will be able to participate in.

He will have to attend regular pacemaker checks to ensure that the device is working properly. 

Providing you follow your doctors advice your son should not have any problems with the pacemaker although it may take a few tweeks to the settings to get them right for your sons needs. My daughter has not had any problems with any of her pacemakers and problems are rare considering the numbers of patients with pacemakers.

Hope that the operation goes well.

Sue

Worried mom

by Prabhu's​ mom - 2017-05-11 04:49:24

Thank you so much tee bee1 and pacemum(Sue). Sue, thank you so much, for all your inputs. May I ask where are you from? We live in India. I hope we have the advanced kind of PMs. Can you please let me know if you have had the PM of your daughter changed and if so at what interval? The doctors here are concerned about the leads getting affected due to growth spurts in kids. 

There were also concerns about external magnetic fields (Ferris wheel, roller coaster s etc) affecting the PM.  How did you cope up with such things?

Thanks once again,

Shanti

Leads/Batteries

by Pacemum - 2017-05-11 17:54:34

We live in the United Kingdom.   My daughter is currently on her third pacemaker box (battery).  Her first battery lasted about 7 years 6 months.  Her second battery lasted about 5 years 6 months.  The batteries last a different number of years for each patient.  The hospital in the United Kingdom we use gives a guide of between 5 and 8 years for the pacemaker box (batteries). The pacemaker leads last longer.   When they put the leads in they can coil extra length inside to account for some growth in children.   My daughter is on her second set of leads which she has had for over 9 years now.

In respect of fair ground rides, they can ride the smaller gentle rides for younger children. Your son should also be allowed on the ferris wheel. The bumper cars or dogems is the main ride to avoid.  It did not affect us when my daughter was younger but as they get older it is harder. There are many alternative activies to fair grounds that people with pacemakers can enjoy.

Hope this helps

Sue

moms

by dwelch - 2017-05-17 02:46:53

I should try to get my mom on this site.  I was a bit older pre-teen when I started seeing the cardiologist, 19 for pacer number one and am now 49 on pacer number five.  Back then pacers in young kids was a new thing pacers being mainstream was a new thing, now they are quite common along with ICDs.  There was no internet back then dont think my folks had anyone else but my doc to work through this with, shielded whatever fears if any they had from me.

There should be some other folks on this site that had pacers from a young age that can also help from the kids perspective.  Very glad to see parents on the site with responses.  I am in the USA, my first pacers were ancient technology and huge compared to today and they worked just fine. I had a lead break when putting in pacer number two the capped it. 

If your child has as dual chamber (the ventricles are being paced by a lead), then in 20-30 years he will like I just dealt with, have issues from the ventricles being paced from the side unlike a normal heart, after 20 years give or take they should start doing echocardiograms to check the ejection fraction (EF), if it drops to a certain point then they may put a new lead in and either pace from that or what I have now is three chamber pacer (bi-ventricle) so that both ventricals are hit at the same time, closer to natural than before.

Battery life can and will vary by patient and their condition and by the device, they cannot in anyway exactly predict how long a particular brand/model will last, sometimes you get one that doesnt last so long and sometimes one that is better, they can do some adjustments to try to make them last longer, but you should prevent them from making his life less comfortable.   No reason IMO to gain a few months on the back end at the price of quality of life, the variability of the battery life of these things he could end up with one more or less pacer across a lifetime than someone else that started at the same time.  Hope for 7-10 years for each of them, but you get what you get.

I was very very active even after was diagnosed with complete heart block.  played soccer, BMX, skateboarded, you name it.  Eventually the doc convinced my parents I had to either play goalie or stop soccer, did that for a few weeks and quit forever, but the BMX and skateboarding were possibly more than the doctor knew about.  After the pacer continued all the activites I wanted, the pacer never restricted me, it might have physical restrictions, cant say I went hiking with a heavy backpack sitting on the device for example.  

As a young, active child, it does hurt quite a bit when you bump it, its metal behind your skin and maybe a little muscle, like pinching the webbing between your fingers with pliers...will eventually, subconsiously, learn to defend/protect the implant site from kids being kids and pushing and shoving and playing and falling and all those things kids do.

if they are sayhing he needs it and you trust them then do it.  it will make him normal!  he will be able to be a normal child and a normal adult and be able to run and play and do normal things instead of being restricted from life.  

surgery every 10 years give or take is no big deal the devices just keep getting better and smaller.  I didnt need pain meds for the last three, dont remember that detail from the first two.  Just had pacer number 5 three or so weeks ago, 48 hours after, i was ready to drive and go back to work.

He will over the course of his life be dealing with a broken lead or due to old tech vs new tech a new lead and removal, etc.  There may be a time they will want to move from the one shoulder to another and at least my docs wanted to preserve that on this go around and I was fortunate I have three working leads 30 years, 23 years and 3 weeks old, and a broken 30 year old lead that is capped all on one side.  

Not everyone here, but certainly some of us, are dealing with being paced most of our lives, so some of this stuff is decades ahead, your son has to read and write and learn math and get a job and all these things before some of this will happen, but my point is to let you know as a person who started this journey as a child myself, it is not a journey of pain or discomfort it is a perfectly normal journey with an extra doctor visit a year that other folks dont have and a surgery every 10 with a few days/weeks of recovery...Aint no thing.  I also have congenital complete heart block.  My resting pace pre surgery was 44BPM and sleeping was in the 30s at least the one and only time i was sleeping pre-pacer with a monitor (the morning before) now that I type this for the first one I went in the day/night before, had the device the next day and spent the night and went home the next day.  As a general rule if you get a new lead expect to spend the night. But otherwise, replacements are outpatient in and out the same day.

The estimated life the computer prints out is just an estimate it is often a pretty bad estimate until it gets to the last few months.  He will eventually have one that goes into safety mode and this is perfectly fine you have months before it is a problem.  It is uncomfortable in that you are locked at 65bpm so you will get out of breath trying to climb stairs or whatever, just have to take it easy until the replacement.  

Each annual checkup the technician will perform some tests on the leads and on him, they are uncomfortable in that one of them it feels like someone is sitting your chest the other they race your heart and you breath harder, particularly with techs that dont warn you, you start to wish you had a knob that messed with their heart.  Litterally seconds of stragnemess probably only once a year after the first year.

My heart beat hard pre-pacer, so the months after I had this empty feeling inside, I felt broken, my heart was pacing like a normal person and wasnt overworking itself.  I checked my pulse a LOT that first year.  Was alive every time I checked, heart was working...He may or may not feel different at first until he gets used to it

Just did a little googling, there is so much good information out there, not to mention the incredible weath of experience on this site.

Sorry to ramble, I tend to do that, as a child patient and now as an adult with a child of my own I feel what you are going through.  good luck and please keep coming back to this site for questions or to help other parents...