Pm into 3.5 year old

pacing children

by Tracey_E - 2023-09-28 13:00:22

We have a few parents of paced children, hopefully they will chime in.

You are referring to epicardial leads. 

The whole elbow above the shoulder restriction is for when it is placed on the chest. They usually place it abdominally in children. I do not know about healing and restrictions for that, only that it's not the same, sorry!

You can tell everything is working well when his heart rate is normal. With CCHB (I have it also) our rate is significantly lower with the pacer. If he gets a Medtronic, it has an app so you can see on your phone that it is pacing. 

Battery depends on a lot of things. There are different models that have different sized batteries. His pacing threshholds. Once it's in place, they can give you an estimate of battery life. 

Welcome to you both

by Gemita - 2023-09-28 13:17:46

I don’t believe we have many members with children with pacemakers of the same age as your little boy although we have a few members with older children who I hope will see your post and respond.  

I attach a link from Great Ormond Street Hospital for Children on “Living with a Pacemaker” in case it is of help.

Your specific questions would perhaps best be answered by your cardiac team who will know your little boy’s exact requirements and heart condition. 

How would you know if the pacemaker is working properly?   Just by observing your little one’s behaviour.  If he seems happy and active, I would imagine that would be a sign that he was feeling okay.  Just like us adults with pacemakers, if things aren’t working well we might start getting symptoms, like palpitations, breathlessness, weakness, tiredness - in fact all the symptoms we had before we got our pacemakers.

I also attach a Pacemaker Club thread on the subject of children and young adults with a pacemaker.  There is some useful information there.

Good luck to you and to your little boy.

Please copy and paste the following links into your main browser to open:-

https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/living-pacemaker/

https://www.pacemakerclub.com/message/27386/children-young-adults-with-pm

THANK YOU

by StrawberryBoat - 2023-09-29 02:40:50

Thank you!! I have read previous comments from both of you on other posts and it means a lot that you have taken the time to read mine. Hopefully I will have a future success story to comment with on worried Mum's posts! The appointment where we will get some answers will only be next week...

Pacemaker as an infant

by MiracleBaby78 - 2023-10-02 01:05:45

Hi, StrawberryBoat.  First, I want to give you encouragement that everything will be fine.  I had my first pacemaker put in as a newborn due to a complete heart block, and at that time, I'm sure they did what they needed to do to keep me from disrupting the healing process.  Also, I want to point out that when I was a baby they put it in my abdomen as opposed to my shoulder muscle so I don't think I had to worry so much about raising my arm.  Maybe it will be a similar process with your boy.  It wasn't until I was a teenager that they moved the site to my shoulder area.  Perhaps one of the reasons why they placed it where they did as an infant was so that I wouldn't dislodge the leads.  I never really thought of that untl now.  My pacemaker never bothered me and I doubt it will bother your boy.  Pacemakers are so much smaller than they were then, too, that they will be even less of a bother to kids nowadays, I imagine.  As far as your other concerns about lead displacement and identifying issues with the PM, your son will have post-op checks to make sure his battery is operating as it should.  The doctors will be able to tell if anything is off.  You will, too, as his mom.  You remind me a lot of my dad by some of your concerns, which were his too.  In the end everything turned out better than he had expected.  It will for you & your son too.  

little help

by dwelch - 2023-10-07 06:37:03

As answered, the lifing arms thing is for shoulder.  Kids are not in the shoulder from what we know from others.

Leads to not stretch, kids do.  My growth spurt was like 9 inches that year my brother managed something like 11-12 inches his growths spurt year.   Barring that you would need new leads like every so many months from now to adult size, they would be pulling themselves from the vein and trying to pull the pacer into the vein or the leads from the pacer.  I belive that is why you dont get them in the shoulder for kids.  I could be wrong.

I am on device number five. CCHB detected pre-teen, first device at 19, I suspect the doc was trying to push it to adult size and not deal with this stuff (had he only known what activites I was up to I would have had a pre-teen pacer).  So mine are all shoulder, etc.  The stitches are internal and dissolve, so it is not necessarily a how many thing.  There are a handful at least.  And then tape strips over that, the tape should stay on for, well, ideally weeks.  Pro-tip that may or may not apply here, but for me medical tape and a storage bag, tape at least the top and sides and I can shower with a new device and not get the strips wet, no need for a sponge bath.  With him at this age maybe a sponge bath is the way to go, but maybe you can tape something down all the way around.   Even as an adult and the doc says leave the strips on "until they fall off", yeah right, they itch I pulled them off over time. just gotta keep him from doing it the first day/week...you are not the first parent with a child having an incision...

Batteries are a crap shoot.  I had a couple that only made 7 years and one that was 10 or more and switched to a biventrical mid way through the life of number four.  I have been paced for 36 years.  They cant predict, engineers have been designing these things for many decades now so its not like you take 100 of the same model and some last one year and some last 20.  They are going to aim for like 10 years.  Even when you have it installed and the interrogation has an estimate on the report and even if the doc comments on that estimate as  you have X years left so we dont need to or we need to blah.  The estimate is somewhat bogus until the units are in weeks.  Brand new devices "wft, why does it say 5 years this is brand new"  units are years, ignore it until the units are weeks.  If it says 5 weeks after 8 years, now you can trust that estimate and it is time to schedule the replacement.  I have had new ones with low estimates like that, and you know every year it says 5 five years not 5,4,3,2...

I dont know about kid devices, one of my adult was was soo wee bitty compared to my first ones...size is primarly determined by battery size/capacity?  Could he make it to adult size on one device?  I am sorry to say I expect this device and number two pre-adult size and then that probably puts him in his 20s for his first adult one.  

Happy to see someone who started as a child pitching in here, us CCHB folks are already unicorns, those that actually started as kids, unicorns with wings.  So even in this community, few and far between and of those how many actually post comments.   Same goes for parents.  

Honestly I didnt read your post right the first time, I thought part of the question is when do you know it is time.   I am happy to hear that it is time.  Sooner is better IMO.  Because one concern is that knowing about it and delaying treatment for whatever reason means he may be treated as crippled in some way and not be able to be a normal child, for a condition that will be trivially cured at some point in his life.  Now the ignorant masses go by what tv and movies and books say (fiction) about pacers and I think it is silly.  Does the average person see glasses on your face and say, oh you have glasses, here hold my arm I will guide you so you dont trip and fall.  No it is the ones without glasses that cannot see that need help, not the ones WITH.  Same with pacers, esp heart block.  Ne special treatment WITH, he is not crippled by his condition WITH the device...THAT is my biggest concern for you as a parent.  I wish we could educate the masses on reality of pacemakers, not the fantasy they are presented with.

Recovery time should be on part with everyrone else.  As a young growing child I expect it may be quicker.  Although as a very young and not a lot of laps around the block person, trying to explain you cant do this for a few months, your sleep is going to suck for a week.  A month is a lifetime to a 3 year old.   What would help me here, is he is not the first child with a pacer and you are not the first parent, countless folks have come before and all gotten through this transition. 

The two of you will do just fine.  And in say 20-30 years he can start posting on this site, and you will be an old-pro parent at this helping other parents...I am sure of all these things.

Ummm, oh yeah in the one I just deleted.  How do you know if it is working or if the leads this or that.  The leads coming out are in that first so many week/month thing.  But in general is it working.   No you wont be able to tell just by looking or watching his activity necessarily.  So many of us with CCHB didnt get treatment until teen/adult, esp before they even knew what caused it or started doing tests pre-birth, etc.    Take his pulse, full 60 seconds, no cheating, not with a monitor (well maybe the led finger clip but not with some watch or chest strap or whatever) finger on wrist or neck or ear on chest.  Know his lower limit setting and if it is below that consistently on subsequent measurements.  Call the doc.  I got through my first year taking my pulse..often...it may take a bit for them to get the pacer tuned, not sure how it works on kids. My first one, note 1990s tech, not like todays.  Took a while to find that fine line between it does not kick in and it kicks in too often and I get double beats. 

Today we have these take home boxes so that is actually the answer.  Now please do not think he is tethered to that box, he is not, it is not a daily requirement or even monthly or even annually.  But if periodically he is near the box and a lead has broken or disloged then it should know and report that (because his rate may be below limit, or other indicator, not that they have some lead test).  You can also push the button to have a report sent if concerned.

Are lead issues common?  Well, I assume doctor google wont even show that lead issues are common, they are not.  Note how even on this site the percentage of actual broken or disloged leads are like zero percentage wise.   FEAR of them is high, but in part that is because of that whole dont do anything for 3-6 months so you dont pull the leads out which is massively inflated for legal/lawyer reasons not because of actual risk, leading to an induced fear leading to lots of posts.  I assume at this point in history you are getting a device with either a take home box or a phone app, keep him close to the box or the phone those 6 weeks.  There should either be an in office or I guess maybe a box/phone test in the next few weeks and then an in office in a few months.  That should cover leads being pulled out.   And as far as breaking them, I would like to see him try, lol.  leaping off the top bunk landing on some lego structure on the floor and breaking a lead without any other emergency room type injury.  Esp if in the abdomen, I cant compute the physics it would take.