Sports at school - what to avoid and how to inform teachers?

restrictions for kids

by Tracey_E - 2021-04-05 09:15:20

I would ask the doctor to write a note with specifically what she can and can't do. I've been that kid, and found that teachers tend to overreact and they held me back from a lot of things I probably could have done because they were afraid to let me overdo it on their watch.  

It might be helpful to always carry a letter about your daughter's medical condition, the treatment for it (pacemaker) and potential precautions/risks with daily activities

by Gemita - 2021-04-05 10:33:13

Welcome Slowdive to you and to your daughter. I believe the most important thing you can do is to make sure that your daughter’s condition - what led to her need for a pacemaker - is firmly stated in writing by her medical team, so that you will have this information to hand to anyone it may concern in the future.  Other than that I would try not to worry and be reassured that the pacemaker is a good fix for your daughter's condition.

Perhaps your daughter’s medical team could also be asked if they are able to confirm in any such letter that the pacemaker is an effective treatment for your daughter’s AV block and symptoms leading up to needing her pacemaker?  If so, this should reassure both you and her teachers that she will come to no harm in her daily activities.  I would also suggest, like Tracey_E says, that they list any precautions (if any) that she may need to take with regard to activities in the school.  Once we are over the healing period though (say after 6 weeks and certainly by now at over 3 months) our devices are usually well embedded into the device pocket area and the leads firmly attached to the heart, making dislodgement or movement extremely unlikely.   

It is difficult to stop a child from being a child and I wouldn’t even try.  You could cause more harm than good.  I believe there is little that she is unable to do within her current age range and strength but it really is a matter for her doctors to confirm in writing any precautions that need to be taken.  They know your daughter's medical condition.  The letter from any doctor may need to be updated from time to time, so that it is kept relevant for her condition, should this change in the future.  I believe you can be confident that your daughter will develop and grow into a healthy young woman with the backing of her pacemaker.  It is there to protect her, not to harm her.  Good luck to you both.

Child

by AgentX86 - 2021-04-05 14:25:49

First, you're not going to stop a child from being a child, nor should you.  There are good suggestions above about asking her doctors what activities she shouldn't engage in but my priority would be to make her life as normal as possible. Let her forget about the pacemaker, except for the additional visits to her cardiologist.  Make them as inconsequential as possible too.

I don't know too much about PMs and children but the normal sports that are proscribed are the contact sports, hockey, football, and the like.  There are risks to all of our children when they're growing up (and doesn't stop) but if the last year hasn't taught us anything else, is that we have to live too.  Let her.

Sport and children with PM

by Selwyn - 2021-04-06 06:32:24

Hi SLOWDIVE,

Welcome to the club. 

There is extensive advice on this subject from other parents.

The best way to access this is to use the search facility in the upper right quadrant. Put in search term "sport", and there are pages to read in relation to the very question you raise. 

If you need further specific advice from members after reading all of this, we are all here to offer our experience and support.

Thanks

by Slowdive - 2021-04-06 16:22:11

Thanks for all your comments, highly appreciated and very helpful for me!

let her play

by dwelch - 2021-04-06 20:55:15

The key here is that she has av block AND has the device.  All I need to know.  She can run and play and be a normal kid and please let her.  As mentioned above all kids have the risk of contact sports or just being kids running and tripping and having fun (every time we bought my daughter new shoes she would inevitably trip walking to school the next day because the shoes were a smidge bigger than the last ones).  

I was that kid too, there are a few of us here that have congenital complete AV block.  I was very athletic growing up.  Then pre-teen they found I had heart block, but they watched it for a while and first pacer at 19.  I was lucky because I was doing things I shouldnt have been doing and survived.  As far as gym class goes I could get out of doing many of the sports, etc.  But I didnt have a device, once i got a device then it was back to normal.

The only thing you need to worry about is contact sports like (american) football or other activities that put direct contact on the device (no boxing).  She can wear a padded shirt for things like soccer(football) and basketball, baseball/softball/cricket.  All of the solo sports are perfectly fine, skiing, snowboarding, bmx, motocross, skateboarding, just going for a bike ride.

AV block is easy to fix with a pacer, if you have to have a heart problem, AV block is the one you want to have.  The pacer makes us normal.  Assuming she has no other conditions, the only thing to worry about is impact on the device and even there the devices are tougher than you think and she will learn just through day to day life of getting dressed, laying in bed, etc how to protect it automatically in the same way that you protect your face.

I have had a device for 34 years almost, more than half of my life, working toward two thirds here soon.  There are other CCHB folks here, not a lot but we exist, so we can understand what it is like being the youngest in the cardiologist office, even now.  And often she will be the doctors youngest patient.

You have found the right site.  I can appreciate the strength it takes to make these decisions.  My parents said the simply trusted the doc and we went with that and that is how I have lived my life with my devices, find a doc you trust and trust the doc you find.  I hope you stick around, as there are not a lot of parents here, some come and go.  There are some teens that come and go too as they get their first devices or nth devices or first adult type devices, etc...We all here know that between media and movies and tv folks simply do not understand pacemakers and assume they are a handicap, when the opposite was true, without the device we had an issue, with the device, not so much.  

Talk to the doc, they should say she can do normal activities once the device has healed, and if this was december, it has healed.  A note for the school to cover contact sports on gym class.  Get the printout from the doc knowing in particular what her lower limit is.  Teach her to take her pulse, one full minute, no shortcuts.  If she feels exhaused, has trouble climibng the stairs one day, or any time, have her take her pulse, if it is well below the lower limit to call home (no need to panic, casually call the cardiologist NOT the emergency room).  (assume that fitbits and such DO NOT work, the infra red finger clips will work fine (can get one for like $15) they dont rely on the bodies electrochemical reactions (hold a flashlight up to your finger you can see your pulse))

She does not need to be afraid of electrical devices...Nor do you.

We (the pacemaker club) have a whole lifetime to share experiences, ill stop rambling now. I hope you and later she sticks around.  CCHB folks are not super common, and parents of CCHB kids less so, but it is a condition that can be very trying for parents and the kids until they learn about it. 

Sorry that you were forced to deal with this but am happy that you made the difficult decision to get the pacer.  NOW you no longer need to worry.  She can enjoy a long normal life, including all the things kids like to do, run and jump and climb and play.

I work in schools

by CMH22567 - 2021-04-08 07:10:51

Sorry to hear about your daughter. Lucky she now has a pacemaker. I have a pacemaker and I work in primary schools in NSW as a learning support teacher. The biggest risk for me is the 30 plus handballs at lunch time, they fly through the air randomly. I have asked not to do lunch duty for the high risk of being hit in the chest. The other risk is children having meltdowns in the class room throwing items arcross the room and children punching. I have a hard protector in the classroom that I can put in encase of emergencies. If I was a parent I of a child with PM I would ask for a face to face meeting with the teacher, learning support teacher. Then to have he information written up on the childs Personal Learning Plan, or medical plan. Which would outline to grab the defibulator then call 000, then if she faints, or is breathless.

Make sure you read the Personal Learning Plan or Medical Plan and make adjustments if needed. Bottom line is to avoid blows to the chest. Take a defib if she goes on camp ect. List her condition on the report so the Ambulance knows what they are dealing with, such as brady or complete heart block. 

Good luck

Thanks again

by Slowdive - 2021-04-08 15:10:59

Thanks also to Dwelch and CMH22567 for your feedback!

She meanwhile had her school entry health examination and I was told to bring a medical letter from the cardiologist with advice for the teachers in case of emergency and what to observe. The school also wants a foto that they will hang in the teacher's room together with emergency info, so that all staff will be aware. She currently still takes blood thinner, but just 2 more months and then no medicine necessary anymore when she will start school. Her pacer does not pace much. In our last 2 checks it was less than 1% active. So the risk is limited. The pauses usually came when she was calm, lying or sitting, mostly at night. At least that's what I have learnt from the week in hospital when she was permanently monitored. I'm so glad it does not need to pace much, so the chances are good for the battery to last long.

I'm not too worried that the PM will be damaged during sports, we already let her do whatever she likes. In the beginning I was a bit worried about electromagnetic fields, I studied the list from Biotronics website and explained her where to keep away from. I removed all magnets from her room and told her to hold tablet/smartphone not to close to her chest etc. But meanwhile I'm very relaxed and dont worry anymore. It just takes a little time to get used to the new situation.

A few weeks ago she was at a playground, a bunch of like 8 kids gathered closely together and she was amongst them. I was wondering what they were doing and then I heard the sound of a metal detector. An older kid was playing with it. She sat right next to it. Honestly I was quite shocked, I ran there and pulled her away from it. Needless to say that she was very angry with her embarrassing mother ;-)  But who would expect a metal detector at a playground?

1% pacing

by AgentX86 - 2021-04-09 15:28:34

I still think you're being a little hard on her (difficult to be a mom in these circumstances, I suppose).  Magnets you'd find around a kid's room aren't going to hurt her.  It's good idea to teach her to keep tablets and phones from resting directly on the PM but as little as 6" away is just fine.  Magnets in the bedding (sometimes sheets and such are held using magnetic "snaps") aren't a good idea because she could roll over on one.  Even with all of that, she's only paced 1% of the time so the chances of a problem are almost zero. Since the pauses were at only night (very common), her risk is about as close to zero as can be otherwise.  Her school is going overboard, as well, but I suppose that's what they do.

There is nothing in a metal detector that will hurt her, either.  It's not a "magnet" at all.  It's really more like a low-frequency radio (simplistic description).  Just teach her to not put anything electonic directly on her chest.  No need to go into great detail and confuse the issue. Just that simple rule.  It's a long way from the nitty details but simple to remember. She can learn other dos and don'ts as she grows up and has a need to know.  Meanwhile, she is a kid dealing with a small health issue.  She doesn't need to deal with mom too.  ;-)

I may sound uncaring but the reality of the situation is that her mental health is in more danger, here, than her physical health.  She has to be allowed to be a kid or she will be scarred for life.

She is old enough to follow these small rules and she will not be "scared for life".

by Slowdive - 2021-04-09 18:47:56

When we returned home from hospital we had a variety of advices from different docs (cardiologists and EPs). One said that she wouldn't even need to avoid sports the first days after implant, the other doc in the same hospital said she shouldn't do sports for 4 weeks and stay away from Kindergarden for at least 2 weeks. Another advise was she could do everything and should go to Kindergarden at day 5 after implant, but she should not enter a train in front waggon. And so on.

At home I downloaded the list from Biotronik's website about EM compatibility, I just wanted a rough guideline. They have 3 groups for appliances - green/yellow/red and with distance in cm. Mobile metal detector is in the red group and should be avoided (link below). Along with Go-cart, arc welding, electric fence, high-voltage test station. So I must believe that it's better to keep her away from metal detectors. (And nothing mentioned at all about trains btw..).

Certainly I could have reacted cooler in that playground situation. But it's also ok to be a bit worried as a mum. It was an exception. And that single situation will certainly not harm her mental health. I was quite traumatized by the time in hospital. The block came out of the blue. Suddenly confronted with pauses of 11 secs. I had to experience episodes where monitors alarmed and only showed a horizontal line. No doctor or nurse came cause they were busy with another emergency. I feared my child would die. I don't know who of you have children, but believe me nobody wants to go through this. My husband couldnt visit due to Covid-restrictions. Back home I had time to recover, got used to the situation and developed trust in the PM. I'm now much more relaxed than in the beginning.

We really let her live a normal life. How comes you think we don't let her?

She is a clever girl who understands what can be a risk and act accordingly. Why should I wait until she is older when she understands it already now? I must tell her not to put the phone on her chest. So I can also tell her to keep away from a metal detector. Or not lay the walkie talkie of her friend on her chest. Or quickly pass the anti-theft-devices in shops. She is old enough to follow these small rules and she will not be "scared for life".

http://biotronik.cdn.mediamid.com/cdn_bio_doc/bio23016/8207/bio23016.pdf

Scarred for life

by AgentX86 - 2021-04-09 20:46:13

Older to understand that not all electronics are the same, nor are some of the threats you mention above.  At 1% pacing, nothing catastropic is going to happen with any magnet.  The PM will just go into default mode, which she may not even notice.

Some EPs are very conservative, others not so much.  Two weeks to go to school is excessive.  One week, OK, she's a kid. The only real danger is ripping the incision open.  Infections are very dangerous.  

The dangers of some devices around pacemakers is overly conservative.  The world runs by lawyers and no one wants to get sued. Nothing is "pacemaker safe" around a lawyer.  My point about learning more as she gets older is that there are hundreds of electronic devices around the house.  Only a small fraction of them are dangerous.  The rule, for now, should be nothing electronic.  It's a simple rule because it's even hard for us as adults to think before every action.  It's (obviously) harder for children.  It's easier to start out simple and as things progress, the specifics can be thrown in the mix.  It's like anything else. 

Why don't I think you let her?  Your own words tell of unnecassary alarmism.  There really is nothing here to get all excited about.  You may not think you're being too much of a helicopter parent but, yes, she's learning fear from you, as she does everything else.

I know what the specific dangers are and what devices pose those dangers (I'm an EE).  Some of us have to be more cautious than others.  If my pacemaker dies, for example, there is a good chance that I will too.  Your daughter is certainly not in that situation.

I'm sorry if I ruffled feathers but in a rather short time she'll forget that she even has a pacemaker.  You may not but in the end, it's her life.  All we can do as parents is help them through and teach them as best we can.

I was a kid with a pacemaker

by ike - 2021-04-20 02:33:04

This is a response to Slowdive about Sports in School.

Hello my name is Isaac. I got my pacemaker back in 1979 summer time, i just got done with 7th grade. So 8th grade i start with my first of 6 pacemakers replacements, im now 53yrs old.

I pretty much gave the nurse at my elementary school a Dr. letter stating my heart condition and i wasn't able to participate in ANY physical sports. At Physical Education class i would have to sit out and watch the other kids participate in class. My location of my pacemaker was on my stomach area and it stuck out like a bar of soap. 

When i stated High School I was put into the disability class for PE class. But my sophomore year and on i was in Racquetball class so that was good. My whole life i was unable to play organized sports or lift heavy things so i never got the chance to lift weights to build up muscles. Its been tough.

Let me know if you have any questions.