15 yr old son with complete heart block and bradycardia

I am trying to find out some info on whether or not my son will be able to continue to play high school basketball with a pacemaker. His condition has recently been upgraded from a 1st degree block to a 3rd degree block. He also has bradycardia with his average heart rate between 41 and 50 while awake. It dips into the 30's at night. His cardiologists says that he doesn't want to put in a pacemaker at this time. I have never heard of anyone with a complete block not on a pacemaker. Does anyone know if he will be able to continue playing basketball when he does have a pacemaker put in?

17 Comments

12 year old

by rkuba - 2009-02-20 01:02:04

HI,
I have a twelve year old with heart block. He had a pacemaker put in on 10/29/08. He is allowed to do everything at this point except sports intended for contact... no football, wrestling, lacrosse. He can do baseball, basketball, soccer. They did suggest he wear protection. He also may not do any weight bearing sports...weight lifting, rope climbing, chin ups, monkey bars... By the way he also has dyslexia.

wow... that's a good question

by pacergirl - 2009-02-20 01:02:09

When I was diagnosed with heart block and the Bradycardia, I could not keep a thought in my head! At work I had to write down the easiest instructions! it was awful. I had no short term memory at all!!! I thought I was loosing my mind. I would walk from the bosses desk to mind and couldn't remember what he had told me to do. I wanted to cry all the time because i was afraid I was going to cost him a lot of money, which I did, and worse, that he would fire me for being incompetent!

I also became dyslexic. I couldn't write anything correctly or type without spellchecker! Reading was hard as well. I'm better now, much.

When oxygen isn't getting to our brain, it ceases to function properly! Makes perfect sense to me now... i was oxygen deprived. It wasn't my fault I couldn't think.... I was suffering greatly.
Good luck to you and your son, and yes, a 2nd opinion is a very good thing.
Pacergirl

doctors

by Tracey_E - 2009-02-20 01:02:49

Does his doctor have other CCHB patients with pacers? I saw 2 pediatric cardiologists when I was growing up and neither had ever had a case like mine. I'm still the youngest pm and only CCHB pateint at my doctor, I'm 42 now! Their impulse was to avoid the pm just because they didn't have other kids who had one, they get that "too young to have a pm" mentality and instinctively want to put it off if at all possible.

Instead of a pediatric cardiologist, you might want to consider an electrophysiologist, a cardiologist that specializes in electrical issues. He's old enough that a specialist might be better than pediatric. We have a few other members here in Texas, you might want to start a new post asking for names in case they don't spot it here.

Another thought, just tossing it out. I spent years knowing I'd eventually need a pm. I dreaded it and hated every visit to the cardiologist, afraid that would be the visit when they'd say I had to get it. The internet wasn't around then so I couldn't research it and find others like me, both of those things would have helped me. The reality was nothing like my fears and I spent a lot of years worrying over what turned out to be an easy surgery and feeling fantastic almost immediately after-a lot of worry for nothing. A lot of people have trouble adjusting mentally to the idea of having it, for me it was a bit of an anticlimax.

I've never heard of a connection between learning disabilities and heart block. AV blocks can be just a fluke of nature- an electrical connection that isn't there, result of infection (not likely if he was born with it) and there are some studies that show a link between women with Lupus and babies with CCHB. Unless you have Lupus, odds are it's just a random thing and not related to anything else. I checked it out when I was pregnant and was told there was no chance I'd pass it on to my kids. Drifted a bit there, sorry! Anyway, point was I'd be surprised if it's related.

lupus

by Tracey_E - 2009-02-20 02:02:14

They are still researching it. They are fairly sure there is a connection but are still working on figuring out exactly what it is.

"he dismissed it as he does most of my questions. "
Reason #1 to find another doctor!!!! I can't trust a doctor that won't respect my right to understand my health.

He could have developed the block when he had the bad flu, some infections can bring it on. I always understood that a 3rd degree block was plain as day on an EKG but a lot of people have it for years and never get diagnosed. Mine was discovered when I was 5, the pediatrician thought he heard a murmur and sent me to a pediatric cardiologist to check it out. Turned out the murmur was the least of my problems but I stayed asymptomatic until my late teens.

15 yr old heart block- Lupus Connection

by Kschap - 2009-02-20 02:02:40



TraceyE -

That is funny that mentioned Lupus - I just heard of that connection just recently. My mother has Lupus, and when I was pregnant with my son I suffered a mild stroke (which I now believe was Bells Palsy). Anyway, they tested me for Lupus and M.S., I do have a high a.n.a reading, but I have no other Lupus symptoms.

Wouldn't that show up at birth though. My son wasn't diagnosed until he was 12, he had gotten very ill with flu like symtoms and was too weak to stand up. We have never figured out what exactly caused it, but he was seen by the same cardiologist for a heart murmur at 10 and there was no sign of a block at that time.

Rkuba-

That is wierd about your child also being dyslexic. I would be curious to know about other children with blocks. I asked my doctor if there could be some correlation but he dismissed it as he does most of my questions.

rkuba

by Tracey_E - 2009-02-20 02:02:53

Did you ask about the weight restriction? After the first few months, those things are usually ok.

15 yr old - ekg

by Kschap - 2009-02-20 03:02:49


They did a routine EKG that showed him still as a 1st degree block. They went ahead and did a treadmill because he was getting tired much easier, he went from under a 7 minute mile to over 9 in about a year. They discovered at that time that he had developed a 3rd degree. So I really don't put much faith into an EKG.

His doctor still considers him asymptomatic, although he gets dizzy during basketball practice and winded easily. I asked his doctor, if hes not worried about dizziness, then WHEN should I be concerned, he told me - "When he passes out". Just what a mother wants to hear....I sit everyday worrying that it will happen

symptoms

by Tracey_E - 2009-02-20 04:02:37

Please, please, please get him to another doctor!!! Waiting until he passes out is just ridiculous. What if he's on steps or using a knife or, god forbid, behind the wheel of a car when it happens? The day I got my pm my hr had dropped off from my usual 40 to 28- I was in danger of cardiac arrest but I never passed out. I was loopy, too loopy to be scared. Fortunately I was coherent enough to call my doctor when I noticed my fingernails were blue. Emergency surgery is a hard way to do it, it's much better to plan it out!

Asymptomatic means not having symptoms, that doctor needs a dictionary. If he's getting dizzy and can't do whatever he wants to do, he is NOT asymptomatic. Something to think about... every time he tries to play harder or run farther and gets short of breath and dizzy, that's a sign that his body needs more oxygen and isn't getting it. His atrial rate is probably perfectly normal and it's cranking along at a higher rate, but the ventricle isn't getting the message to raise his hr. Yeah, the ventricle's going fast enough to keep him upright, but it's not beating enough to give his body the oxygen it needs. This is very hard on the organs.

I apologize if I have been too blunt or scared you, but I really don't think his doctor is doing any of you any favors by waiting indefinitely. He may not need the pm right now, but he will most likely need it before your current doctor is ready to give it to him. The time to get it is before he is in any danger, not after you've had a warning as serious as passing out.

And getting it sooner rather than later means he can get back to that 7 minute mile and feeling good until the end of practice. AV blocks are the absolute easiest thing to fix with a pm, we're very fortunate. Our hearts beat normally, the pm just fixes the broken circuit so we can have our active lives back.

What??

by Suze - 2009-02-20 06:02:50

The doctor actually said he'll worry about it when he passes out? I'd get him in for a second opinion faster than you can say "see ya" to this doctor. I don't mean to sound flippant...I'm really concerned.

Good luck,
Suze

As much as I hate to say it,

by bobad - 2009-02-20 09:02:58


The doctor's probably right.

Young people adapt amazingly well to heart conditions, and sometimes don't even know they have a problem until 20's or 30's.

I think the doctor believes your son is better off without the pacer at this point because having a pacer is not a good thing. His condition is worrisome and affects his life, but not as much as a pacer, believe me. Also, it's common for doctors to not want to treat bradycardia until it becomes symptomatic. Unfortunately, that usually means fainting.

Heart block is usually not dangerous in an otherswise healthy heart, and is just about always self-limiting.

Competitive sports are just about impossible with a pacer because of the possibility of lead dislodgment. They often dislodge for no good reason.

Good luck to your son and you,,,

Bob A.

bob

by Tracey_E - 2009-02-20 10:02:59

He's not adapting and he's not asymptomatic, he's losing his stamina and getting dizzy spells.

I must respectfully disagree...
...saying heart block is not dangerous in an otherwise healthy heart is just plain not true. Had I believed that, I would have died in May of 1993 of my CHB. And no, I never fainted.

...competititive sports are not impossible. Go google it. There were athletes in the Olympics last summer with pm's.

... after the first six weeks, the odds of leads dislodging are extremely minimal. After the first year it's almost impossible. Leads may occasionally go bad, but they don't dislodge once they're grown into place. That's why they've invented a laser removal procedure- because there's no other way to get them out once they're grown in.

We all come from different places and have had different experiences. Please don't let your unfortunate experiences lead you to scaring people needlessly or giving inaccurate advice.

15 yr old heart block

by Kschap - 2009-02-20 12:02:02

Thank you for your responses. I too feel like he should be fitted with the pacemaker. I am not sure why he is waiting. I am looking for another doctor to get a second opinion, it is just so hard to no which one to trust. We are in San Antonio Texas if anyone can recommend a good pediatric cardiologist.

Also, does anyone know of any correlation between heart block and learning disabilaties? My son is also dyslexic and I have always wondered if it was do to his slow heart rate or totally unrelated.

Hi, welcome

by pacergirl - 2009-02-20 12:02:43

You are a good Mom, thinking ahead and how this situation will change your son's life.

I also have heart block and bradycardia. After I got the pacemaker, I asked my Dr. how will I be able to "live" now? Will I be able to Scuba? Skydive? Race? in other words will I be able to carry on as before when I wasn't sick? His answer to me was "If you could do all those things before the Pacemaker implant, you will certainly be able to continue so with the Pacemaker".

I love being busy and having fun. Oh, before I forget.... I couldn't play basketball before (only 5' 2" tall) and I still can't play! No talent!

So talk to your Dr about this and you may be surprised by what he says!

Good luck to you and your son,
All the best,
Pacergirl

CHB

by Tracey_E - 2009-02-20 12:02:44

I was born with CHB and did not get a pm until 27. That's the exception, not the rule! Most get it when it's diagnosed, by late teens at the oldest. My rate was mid 40's until the year or two before I got the pm. I should have had it sooner but my decline was so gradual that I didn't realize how bad it was until I had a crisis and ended up in emergency surgery. I felt fabulous after I got it, more energy and stamina than I'd ever had before, and I wished I'd gotten it sooner.

Just my opinion, but 30's is pretty low and his condition has changed. It's not dangerous now but if it gets any lower than that it will be. We can feel pretty good and get by with a hr under 40 but it's hard on the body, our organs need more oxygen than that. Why wait on the pm? I'm not a doctor but if one of my kids had the condition I have and a hr dipping that low, they'd be getting the pm now. Again, just my opinion so take it with a grain of salt.

Tackle football and karate are usually the things they all agree we shouldn't do, every doctor has a different opinion on the other sports. He should be able to still play bball, though he may need to get a guard to protect the pm from a direct hit. Just make sure the surgeon knows he's athletic so it's placed a bit more out of the way than usual. Sometimes they can place it a bit lower and/or off to the side so it's less intrusive.

If you have any questions, please let us know! We have teens here with CHB and pm's. We have other adults like me who have lived full, healthy lives with a pm for years. Feel free to pick our brains!

Lupus connection

by Shell - 2009-02-21 09:02:36

I was born with CHB and for years the doctor's didn't know what caused it. When I was 11 my mother was diagnosed with lupus. It was quite a few years after that they connected it to my chb. Now I pick on her and tell it's all her fault. In school I did all the regular things that kids do, I was a cheerleader and most of my friends did know I had a slow heart rate. I definitely was an exception to the rule though. I always new I would get a pm and was told that it may not be until I was in my late 40's. I did get it almost 3 years ago at 34. Definitely later than most.

Shell, lupus

by Tracey_E - 2009-02-21 10:02:30

I read somewhere that it's not only women who have been diagnosed with Lupus having a higher rate of giving birth to a baby with CCHB, but also women prone to it who may or may not develop it later in life... so, your mom fits into that category. I've always been a bit paranoid that my CCHB is an indicator that some day my mom will get it. She's 64 now and no signs of it.

15yr.old w/ bradycardia

by dw406904 - 2009-03-31 11:03:13

I am 62, play basketball 4-5 times a week in over 40 pickup games and have 3rd degree heartblock w/ a resting HR of 33-34, w/ and ef of 55%. One cardiologist says get a pm now, an electrophysiologist says its recommended, but not mandatory.
I would wait, if your son's hr stays where it is, you should be able to find a cardiologist who will agree.

You know you're wired when...

You play MP3 files on your pacer.

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