# Need help making a decision /DONE update 62



## chaoticzenmom (May 21, 2005)

This could go in health...nutrition, or frugality...or special needs...maybe TAO, but I think it's more of a parenting decision, so I'll ask here. I'm not asking how to treat this problem, just on how to make a decision about it.

My son has a heart condition called Ventricular Tachycardia. It started when he was 4, I believe and was found last year when he was 8. It can be a serious condition, but at the moment, his cardio isn't worried about his immediate health.This is the thing that often kills teens during sports...and causes sudden unexplained death in adults. His cardio isn't worried about that happening at the moment. I should mention that he's one of the best cardios in the country. Ok, here's where it gets confusing. His cardio things that fixing this is an elective procedure right now, but would be completely covered by insurance if we were to decide to have it fixed. Often, people grow out of it, but it can become worse at puberty. His heart function is good, but the heartrate is abnormal almost 50% of the time. It's worse while he sleeps. He has no real symptoms, but says that sometimes he feels dizzy.

Monitoring this costs us 2500 a year. The surgery costs 30,000, but would be completely covered and would fix the problem where there was no need to monitor it anymore.

Also, although the cardio says that there is no dietary or natural treatment for this, I've been reading that sometimes lack of vit. D, Potassium, and magnesium can cause this. My son eats almost no vegetables or fruits.

If my husband were to get laid off and then my son needed this surgery, we would not be able to afford it. My thinking is that we should fix it while we can afford to. I'm against elective procedures though. Maybe I can treat this with nutrition, although the dr. says that's highly unlikely...but of course adds that it wouldn't hurt. I worry about my son while he's sleeping and check on him first thing every morning as soon as I wake up.

I need some 3rd party decision help here. What would you do as a parent...fix it now or work on nutrition and keep monitoring it. There's no real threat of a layoff right now, but in this economy....

I should add that fixing it involves ablation through the veins and not open heart surgery.

thanks in advance
lisa


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## fruitfulmomma (Jun 8, 2002)

I would need to know what the risks vs. benefits of having it fixed were before I made that decision. I'm generally not one to jump on the surgery bandwagon but in the case I might. In the mean time I would be working on the nutritional aspect as available.


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## Quinalla (May 23, 2005)

Well, it honestly sounds like it is not on the super elective side of elective at the very least since his heart rate is abnormal 50% of the time and he is reporting dizziness. This is one where I too would consider the surgery after weighing all the pros and cons. Another thing to consider, is the surgery easier on him to do it now or in the future if it becomes a problem, or does it not make a significant difference? I know you said often people grow out of it, you have probably seen the actual numbers, but if not get your hands on them. Get all the data and information you can and lay it all out at once in some kind of format so you can look at the whole picture. Good luck with your decision


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## chaoticzenmom (May 21, 2005)

Right Quinella, it's on the less elective side of elective. The risks of the ablation are minimal and mostly theoretical...such as radiation exposure, vein or heart puncture and the normal risks of general anesthesia. The risks of not doing it are that the dr. only says his opinion that it's elective...but what if he's wrong there. He admits that they sometimes don't know how serious it is until they are doing the reparations.

I'm definitely going to be working on nutrition.


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## JessicaS (Nov 18, 2001)

What does your son think?

I would start talking about it with my child, I think your reasons for surgery now are valid and I would probably consider the same thing.


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## Beckamomof4 (Apr 15, 2007)

My daughter had heart surgery at 14 months. There was no doubt in my mind that she needed it done. If she didn't have it done, I would not have my daughter today. I feel that you can not mess with the heart, if something needs fixed with the heart, fix it. My mother also had a heart attack, so I may just be very passionate about the subject, but that is my side!


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## veganone (May 10, 2007)

Your son is having symptoms - he's dizzy and has an abnormal heartrate.

If you don't have it now, there's a chance you won't be able to afford it later, and the potential risk to your son is SUDDEN DEATH when he's older?

I realize how scary heart surgery is, but there's not really an option here, IMO.


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## chaoticzenmom (May 21, 2005)

My son doesn't want to do the ablation. He was in the discussion when we talked about the procedure. But, he's not willing to work on other options, such as eating well to see if that helps the situation though. I can sneak vegetables into him only so much.

He just told me last night that he sometimes feels dizzy when he's doing nothing.

Maybe I should find a better way to present the options to him. I just read about the diet connection this morning and the cardio swears that this isn't really the issue and I can't fix this with nutrition. But with me knowing that he has such a bad diet (not exactly the SAD diet, but it's very meat, wheat and potatoes), I wonder if that really is the key. I looked for nutrition info relating to this last year and there was none...I just happened to find a study about VT and vit. D, magnesium and potassium this morning.

Another risk of not doing it is that it would eventually tire out or enlarge his heart. Right now, it's every other beat, but it could get as bad as 5 bad beats and one good one.
It's hard to get the info out of the cardio. He says..."It's still elective, but there could be good reason to do it." Lot of info there! I word my questions in different ways, but he still says that same thing. He's willing to do it, it may be warranted, but it is still elective. Not elective as in insurance would find it elective, but elective in his eyes. He says that he wouldn't make the decision based on finances...but that IS a factor to us because if we had no insurance and needed this done...it would be a BIG deal. When this thing is no longer elective, it means that it's life threatening.


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## JessicaS (Nov 18, 2001)

Will this get better on its own or is it just a question of *when* he has surgery not really *if*?


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## JL83 (Aug 7, 2009)

I don't think I would let an 8yo make a decision on something of this magnitude. Sometimes we have to be the parent and chose for them.

From what I know about this condition, the risks of not attempting treatment are very serious (AKA death). I don't think an 8yo has the ability to really understand what the risks/benefits are.


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## chaoticzenmom (May 21, 2005)

It could go away on its own, but may not. During the last year and a half, it's gotten slightly worse. Hormones usually aggravate the problem, so during adolescence it's likely to get worse, but could go away before college age. Got all that?LOL

I'm glad to hear others opinions. At least I know I'm not crazy for wanting this thing fixed now. I'm thinking that this is a low risk ablation. He says it's in an easy to get to area. Why would he think it's elective? Low risk surgery will fix this 95% of the time. I know I like conservative, non-fearbased dr's, but I really wish he'd just say "we should get this taken care of." It's not really reassurring when he says he's pretty sure that this isn't a big deal right now. "Pretty sure?"


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## JessicaS (Nov 18, 2001)

No one is saying for the child to make the decisions he is just involved in the discussion.


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## JessicaS (Nov 18, 2001)

Quote:


Originally Posted by *chaoticzenmom* 
It could go away on its own, but may not. During the last year and a half, it's gotten slightly worse. Hormones usually aggravate the problem, so during adolescence it's likely to get worse, but could go away before college age. Got all that?LOL

I'm glad to hear others opinions. At least I know I'm not crazy for wanting this thing fixed now. I'm thinking that this is a low risk ablation. He says it's in an easy to get to area. Why would he think it's elective? Low risk surgery will fix this 95% of the time. I know I like conservative, non-fearbased dr's, but I really wish he'd just say "we should get this taken care of." It's not really reassurring when he says he's pretty sure that this isn't a big deal right now. "Pretty sure?"

Have you gotten a second opinion?

I mean, my ds' cardiologist is sure his CHD is looking good atm but if they weren't sure then I would want a second opinion.


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## GuildJenn (Jan 10, 2007)

I'd get a second opinion. But I also think the daily fear of losing your son is part of the equation - that's not good stress, and you also don't want to limit his life out of fear when surgery could fix it.

I would still want to hear about the risks and benefits but I would lean towards having it done, from what you've said. After a second opinion.


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## chaoticzenmom (May 21, 2005)

No, and I'm not sure I want a 2nd opinion. I've had run-ins with alarmist doctors and the problems they create. This guy does the procedure several times a week at Children's hospital. I feel very comfortable bombarding him with questions and calling him on the phone if I needed. That's so hard to find that I doubt I'd get anywhere with a dif. dr. But maybe I should consider it.

What is CHD?...nevermind.. I found it. That would be even more stressful than this, I'm afraid.


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## nummies (Jun 9, 2007)

I would probably have the surgery.


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## Storm Bride (Mar 2, 2005)

Quote:


Originally Posted by *chaoticzenmom* 
He just told me last night that he sometimes feels dizzy when he's doing nothing.

I hate surgery with a passion, but I'd do it. This is kind of scary. If he's feeling dizzy, that says to me that the blood flow to his head (brain) is compromised sometimes, which also means he's probably not getting a good, consistent supply of oxygen to his brain. There's NO way to know what the long term effects of that could be (maybe nothing - maybe damage).

Quote:

Maybe I should find a better way to present the options to him. I just read about the diet connection this morning and the cardio swears that this isn't really the issue and I can't fix this with nutrition.
Well, I'd take that with a grain of salt, because ime, doctors aren't very well educated about nutrition.

Quote:

Another risk of not doing it is that it would eventually tire out or enlarge his heart. Right now, it's every other beat, but it could get as bad as 5 bad beats and one good one.
See...your son _might_ get better without the surgery. You don't know. IMO, that possibility, however remote (or not) it may be, is the only reason this could possibly be considered "elective". If it doesn't fix itself, he's going to need this surgery at some point. Do you know what the odds are that it will correct itself?

Quote:

He says that he wouldn't make the decision based on finances...
That's stupid. If your son needs this later to save his _life_, and you can't afford it, that's freaking serious. I can't even wrap my brain around why the cardio would even say that!

Honestly - as much as I hate surgery, I suspect I'd have it done in this situation. I'd have to see the actual stats, but this is just a little too major for me to be terribly willing to let it ride. Maybe try the nutrition and monitoring it for six months to a year? If there's any improvement (could you tell?), then maybe take the chance on not being able to afford the surgery if and when. The whole thing would make me a bit edgy, though.

And, I have to agree with a pp. If your son isn't even willing to work with you on nutrition, it's a strong indicator that he doesn't understand how serious this is, or the possible ramifications of not doing the ablation. You may have to override him.


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## Storm Bride (Mar 2, 2005)

Quote:


Originally Posted by *chaoticzenmom* 
Why would he think it's elective?

Doctors don't use the word "elective" like normal people. As someone who has had three "elective" c-sections, you can trust me on this.


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## SeekingJoy (Apr 30, 2007)

I would talk with my kid to throughly explain why and listen to fears, but I would have the surgery. It is a life threatening condition that can likely be fixed through a low-risk surgery. We would have it ASAP.


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## eclipse (Mar 13, 2003)

I would be seriously considering the surgery. When I was in 10th grade, a boy I knew casually all through Jr High dropped dead jogging in PE class from what sounds like the same thing your son has. He hadn't been having any problems that anyone knew of - just fell over and died on the track. I don't tell you that to be alarmist, because I'm sure you've heard plenty of those stories - but having experienced that in a school mate, I think if I knew my son had this and didn't have surgery, I wouldn't ever be able to relax, I'd be constantly on his case about not exerting himself, etc. I think it would make both him and me miserable. It might be technically elective, but it sounds like it would seriously improve his quality of life.


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## veganone (May 10, 2007)

IME with cardios, they will give you probabilities and not concrete answers, because they can't KNOW with certainty what will happen. Some are more positive than others, but they can't tell you for sure.


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## HarperRose (Feb 22, 2007)

Quote:


Originally Posted by *JL83* 
I don't think I would let an 8yo make a decision on something of this magnitude. Sometimes we have to be the parent and chose for them.

Absolutely.

Quote:

From what I know about this condition, the risks of not attempting treatment are very serious (AKA death). I don't think an 8yo has the ability to really understand what the risks/benefits are.
I agree.

I would not be giving that choice to a child. My kids don't get the choice of whether to receive dental care. They get it. It's my job to make sure they have good teeth. They don't get the choice on whether to have a life-altering surgery, either. If it will improve their life, they will get the surgery.








This sounds hard to deal with.

ETA: I realize the child isn't given the decision, just involved. I think I would have presented it to him in such a way that he would know that it's not an aoption.


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## JessicaTX (Jul 9, 2006)

So will his activity need to be limited as he's growing up until you are sure he's outgrown it, if he's going to that is? I think I would probably choose to have the surgery, so that my son could have a fuller life. My kids love to be involved in sports and stuff, and I think i'd be too afraid to let them if they had that condition :/


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## JessicaS (Nov 18, 2001)

Quote:


Originally Posted by *chaoticzenmom* 

Also, although the cardio says that there is no dietary or natural treatment for this, I've been reading that sometimes lack of vit. D, Potassium, and magnesium can cause this. My son eats almost no vegetables or fruits.


I saw some things saying that..but is this the sort of thing that there is the damage and then once the damage is there it has to be fixed?

I saw it as a "cause" but not as something that could fix it









I saw that medication was used to suppress it, is this something y'all have tried?

Is the surgery the thing with the catheter and electrodes being used on the damaged areas or is it the open heart?


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## chaoticzenmom (May 21, 2005)

Quote:


Originally Posted by *veganone* 
IME with cardios, they will give you probabilities and not concrete answers, because they can't KNOW with certainty what will happen. Some are more positive than others, but they can't tell you for sure.

You're the parent, and you have to make this decision for your DS. It's not up to him - kids have parents for a reason. He needs you to make the hard decisions because he's not capable of making them yet.

Is the cardio aware that your DS is having dizziness? Because for DD's condition that would have been an indication to start medication, if not surgery.

I did tell the cardio about the dizziness. He said that we don't know for sure if that's the cause. The ultrasound showed perfect flow and normal walls, so he's going by that as well as the fact that my son hasn't passed out etc.

I think we're going to have it done. I just needed to know I wasn't crazy for it.

Thanks all who responded. You've helped A LOT! We will all talk it over tonight and most likely call the dr. tomorrow to tell him I want it done. That alone feels like a mountain to climb!

I'm babysitting lots of extra kids today, so I can't be online until later.

Thanks again.
Lisa


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## chaoticzenmom (May 21, 2005)

Quote:


Originally Posted by *abimommy* 
I saw some things saying that..but is this the sort of thing that there is the damage and then once the damage is there it has to be fixed?

I saw it as a "cause" but not as something that could fix it









I saw that medication was used to suppress it, is this something y'all have tried?

Is the surgery the thing with the catheter and electrodes being used on the damaged areas or is it the open heart?

the cathedar. Yes, I think you're right. WE can't fix it, even though nutrition may have been the cause. We didn't start out knowing anything about nutrition and poptarts with chocolate milk used to count as a meal.









As for meds...they'll likely worsen his. It'lll slow down his entire heart, making the problem worse. It's ablation or nothing.


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## GuildJenn (Jan 10, 2007)

Quote:


Originally Posted by *chaoticzenmom* 
No, and I'm not sure I want a 2nd opinion. I've had run-ins with alarmist doctors and the problems they create. This guy does the procedure several times a week at Children's hospital. I feel very comfortable bombarding him with questions and calling him on the phone if I needed. That's so hard to find that I doubt I'd get anywhere with a dif. dr. But maybe I should consider it.

What is CHD?...nevermind.. I found it. That would be even more stressful than this, I'm afraid.

Well that's fair too. I think in that case, I would have the surgery. I'm not sure I would characterize doctors as "alarmist" though, although as someone who lost a child due to lack of alarm, take that with a grain of salt.


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## nummies (Jun 9, 2007)

I do have a question for you about this. I have Postural Orthostatic Tachycardia (basically just means that when I change positions my heartrate speeds up rapidly, like 80 beats to 150 in seconds). Anyhoo, in my late teens, I had a heart cath and ablation done.

Will his ablation be done through the vein in his groin?

If so, I will say that recovery from this is minimal. The pain was even less so.


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## JessicaS (Nov 18, 2001)

Quote:


Originally Posted by *chaoticzenmom* 
the cathedar. Yes, I think you're right. WE can't fix it, even though nutrition may have been the cause. We didn't start out knowing anything about nutrition and poptarts with chocolate milk used to count as a meal.

















It isn't your fault, I saw several causes listed not just that. There isn't really a way of knowing for sure what led to this.

I would do it if it is the catheter thing. Open heart I might hesitate a lot more









Quote:


As for meds...they'll likely worsen his. It'lll slow down his entire heart, making the problem worse. It's ablation or nothing.
I see. It is unfortunate that less invasive treatments aren't an option.


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## chaoticzenmom (May 21, 2005)

Quote:


Originally Posted by *nummies* 
I do have a question for you about this. I have Postural Orthostatic Tachycardia (basically just means that when I change positions my heartrate speeds up rapidly, like 80 beats to 150 in seconds). Anyhoo, in my late teens, I had a heart cath and ablation done.

Will his ablation be done through the vein in his groin?

If so, I will say that recovery from this is minimal. The pain was even less so.

Thanks. Yes, it's through the groin. That's nice to hear a first-hand reassurance.


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## sahmmie (Jan 13, 2008)

Oh my! I really feel for you. I think given that he IS having symptoms (dizziness and increased heart rate), and that sudden death could occur out of nowhere with this condition, and that the procedure comes with fairly minimal risk, and all the other factors you mention (that you're insurance will cover it, your dh has a job now, etc.) I'd get it done asap. Wouldn't the peace of mind be better than living years not knowing if it's going to get better or not, or if he may suddenly have a heart attack, or if your husband will have a job when the surgery becomes an immediate need? Because it's the heart, I'd be more likely to act fast, rather than wait and see. Good luck with your decision and please let us know what you decide. Oh, and I agree, I'd probably not let my 8 yr old have too much say.


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## chaoticzenmom (May 21, 2005)

Quote:


Originally Posted by *GuildJenn* 
Well that's fair too. I think in that case, I would have the surgery. I'm not sure I would characterize doctors as "alarmist" though, although as someone who lost a child due to lack of alarm, take that with a grain of salt.









I'm sorry. I guess non-alarmist isn't that great either.


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## chaoticzenmom (May 21, 2005)

Quote:


Originally Posted by *sahmmie* 
Wouldn't the peace of mind be better than living years not knowing if it's going to get better or not, or if he may suddenly have a heart attack, or if your husband will have a job when the surgery becomes an immediate need?

Thanks, this is exactly how I feel. I'm going to have it done...We'll get on the same page about it tonight and call tomorrow. Just saying that makes my palms sweat. I think this thing is going to give ME heart problems!

Thanks all....have to go now, but I'll check back later. You've all helped a lot.


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## TCMoulton (Oct 30, 2003)

Heart surgery is always less risky when performed in non-emergent conditions. I would absolutely have the procedure done before his heart function has an opportunity to deteriorate any further.


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## aran (Feb 9, 2005)

Based on my understanding of your situation, I think I would opt for the surgery - even though that's a scary choice.


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## nummies (Jun 9, 2007)

Quote:


Originally Posted by *chaoticzenmom* 
Thanks. Yes, it's through the groin. That's nice to hear a first-hand reassurance.

That's good to hear.

Honestly, it was easy for me. I wasn't even under general anesthesia, but more of a "twilight" type sleep. They also gave me Versed so I was just as happy as a clam. They took me back to the room, which overall wasn't too bad. A little cold, but ok. Gave me the Versed in my IV and I was out. The catheter isn't much to worry about at all. They do this procedure under X-ray type equipment. When I "woke up", I was in my recovery area and had a tiny little dot where the catheter was placed. Seriously, my IV site bruised up and the catheter site didn't! I had to remain lying down for 6-8 hours after the procedure to make sure that the catheter site didn't start bleeding. But that was ok by me, had some ice cream and watched TV. The worst part of the whole thing was trying to figure out how to pee in a bedpan!







I kinda made a mess with that. Anyway, I was out the door by that evening and just rested at home that night.

I won't tell you not to be nervous, because I am sure that I would be a wreck in your shoes! But just wanted to give you my experience with it.


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## mumkimum (Nov 14, 2006)

Is there any way you could meet another kid who's had the same condition/procedure? Something like that might help reassure your son if he has a lot of feelings against it, you could talk to parents who made the same decision. Your doctor or someone he works with might be able to help arrange something like this for you.

Best of luck with it.


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## mysticmomma (Feb 8, 2005)

surgery now


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## pjs (Mar 30, 2005)

I would opt for the surgery since it is not open heart. I know dr's use of elective and our use of elective is different, but I'd want to make sure it was considered medically necessary and would be covered by insurance before I reserved an OR.


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## moaningminny (Dec 31, 2007)

I would do it. From what I understand ablation is a fairly non-invasive procedure that has a short recovery time, at least for adults. I'm not too sure about kids though.

I know it's difficult to deal with your child having any type of surgery. My daughter had her strabismus repaired at 2.5 years old, and I was a wreck.


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## MamaMem (Sep 27, 2008)

If I were you... I would have the surgery. My dad died at 40 when I was 17 bc of V-Fib. No one knew he had it. Mostly his was caused by 2 silent heart attacks he had 3 and 15 years earlier. My brother lives with A-Fib. If a simple operation could help him, it would be done.

I understand your questioning whether you should or not. I think it is important that your son be involved in the care along the way. Choosing between this and possible death is a little beyond his maturity imho. But it is a big enough deal taht he needs to "be ok" with whatever your decision. Does that make any sense?

As for the financial part. Don't let that be your only guiding light.


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## EFmom (Mar 16, 2002)

I would thoroughly research the risk associated with the surgery, and if it really is small, I would go for the surgery. For me, this falls squarely in the realm of a parental decision.

Dh is a high school teacher in a fairly small school. He's been teaching there for about a dozen years and has two very unfortunate situations arise with kids with this condition. I'm sure it's a statistical fluke, but it certainly colors my perception of what to do.


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## beanma (Jan 6, 2002)

I would definitely get a second opinion. My dad had heart surgery (well actually it was for an abdominal aortic aneurysm) and it was done by one of the best doctors in the country, too, at Duke. The thing about surgeons is they're surgeons. That's what they're trained in. This guy did do the job on my dad and, of course, my dad wasn't as young and fit as your son and it was not the easy procedure that your son's sounds like it will be, but while technically my dad's surgery was a success (he fixed the problem) my dad never completely recovered from the surgery and has been in a nursing home for the past 7 years bedridden while he walked into the hospital. It was "elective" surgery, but a very, very serious condition.

Of course in hindsight none of us would have him do it again. The doctor was a star surgeon and really we all liked him, but I don't think he gave us or we asked for enough info. We thought worse case scenario was we lose Dad during the surgery (and we almost did-it was about 8 hrs and they had to take him back in for a bleed out later), but never considered he might make it through the surgery, but never really recover and be bedridden, etc, etc.

Ask your son's doc a lot of questions. Ask worse case scenarios and best case scenarios, complications, and what he would do if it were his child.

Your son's situation is very very different than my dad's was, but I really would get a second opinion even though you've put the wheels in motion. I wouldn't advise stopping the wheels, but I'd get the second opinion if you can swing it.

Nutritionally, fish oil is very good for cardiac health and specifically for regulating the heartbeat. There are medications, too, but I imagine your Dr has told you about the pros and cons there. My mom has an irregular heartbeat (I'm sure a very different condition than your sons) and she takes Coumadin (Warfarin) for it which is a very strong blood thinner. It inhibits clotting so that if her heart beat slows and the blood pools she won't start to clot and then have a stroke or pulmonary embolism.

Encouraging fruits and veggies is great, of course, but be cautious about supplements (not advising against, but just caution). Electrolytes (the magnesium, potassium, and sodium) need to be in balance or they can throw your heartbeat and your sanity off. My mom had pneumonia last summer and was on a long standing diurectic for high blood pressure. During the pneumonia she lost her appetite but continued to take her diurectic. It pulled the water and electrolytes out of her system, but she wasn't putting enough back in and she got all outta whack. She was quite loony and she did end up being diagnosed with the atrial fib. Of course, again, she's 83 and that's a very different scenario from your son's. My point is the electrolytes are essential for cardiac health and brain function, but they need to be in a specific balance. Gatorade or something like that might be good if you really feel like he's deficient.

hth and good luck. I'm not at all advising against surgery, but I would do a whole lot of research before I would commit. I'm sympathetic about the job/insurance thing, too, as there have been a lot of layoffs at DH's place of employment and sometimes we feel like we're on pins and needles here. If your DH should lose his job the new Recovery Act COBRA http://www.dol.gov/ebsa/cobra.html might help you out. It reduces the rates.

hth


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## southernmama (May 1, 2004)

my dad had this and died suddenly @ the age of 35! he was healthy no symptoms and an athlete! it was determined that it was a ventricular defect he had since birht-get the surgery- i would give anything for my dad to be here with his grandkids today!


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## limabean (Aug 31, 2005)

Quote:


Originally Posted by *Storm Bride* 
Doctors don't use the word "elective" like normal people. As someone who has had three "elective" c-sections, you can trust me on this.









:

They just use "elective" to mean "nonemergent," as in the person wasn't admitted through the ER or brought in by ambulance. If you schedule a surgery, even a necessary, life-saving surgery, it's termed "elective." It doesn't mean it's frivolous or cosmetic or anything.


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## confustication (Mar 18, 2006)

My mother has WPW, which is controlled through medication. However, a side effect of the medication is that her heart rate is kept low- even when there is an increased demand. She's adjusted her life for decades to avoid episodes of tachycardia. The ablation wasn't an option for her in the beginning, and this is how things have been for so long for her, that she doesn't want to change things now. However, had this been an option earlier in her life, she would have had it done.

In your situation, I'd probably look into scheduling the surgery. I understand the fears, but I wouldn't want my child to not be able to take part in activities as a teen, or to have to face increased risk in the coming years.


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## One_Girl (Feb 8, 2008)

I would listen to the specialist, especially if he is one of the best in the country. I would not follow advice that I found on internet websites or even in books for something this big. Anyone can put up an internet website and books are really easy to publish. I think that this isn't something to wait on and hope that it doesn't get worse.


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## rubidoux (Aug 22, 2003)

I woud totally have it and I wouldn't give my child a vote. lol But really. I don't think I could live with that kind of risk over our heads. Also, and this may sound unethical somehow, I would fear that if I didn't do it when I had the chance, what if he decides not to do it even though he really needs it when he's old enough that he's making the decisions? I would just do it for sure.


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## Aridel (Apr 25, 2004)

It's good to hear that you came to a decision! This does sound like a surgery that would help improve his quality of life - and yours by drastically reducing your stress. The lead-up to the surgery will be miserable, but it will end, and not just drag on for years.

That said, there is no way to know what caused your son's condition. Sometimes people do everything right, and a child still has a dangerous medical issue. If you are feeling he needs dietary changes or supplements, there is nothing to prevent doing that in combination with the surgery, to help his general health.

I'm not surprised he doesn't want the surgery. Surgery can be a scary thing for a child - just think how terrifying it is for adults - but some children do better with an adult showing how confident they are in the decision, even if he may be angry about it at the same time! Depending on his personality, he may be calmer after being walked through what is going to happen and getting several opportunities to talk through it, or that may freak him out more! I would give him some control of the process, though, so that he knows you are in control but he has some say - what steps can he participate in?

And big, big hugs! This is a tough, tough decision, but you sound like you know what to do next.


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## Fuamami (Mar 16, 2005)

I haven't read the responses, but my MIL had that and when she got to be about 64, it really started slowing her down. She had episodes throughout her life where it would bother her. I'm not sure how many different kinds of that there are, but I know that's what it was because I helped her research the surgery on the internet.

Anyway, long story short, she had the surgery. As I understand it, it was a little shock to kill the tissue that was misfiring. And it worked wonderfully and cured her completely.

Also, she has done yoga for years, is very fit, and eats really well. I don't know if she experimented with different diets, but from the way I understand it, I don't think it would have helped her too much. The surgery did, though, and was really pretty easy. So I guess if I were you, I'd do it.


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## WC_hapamama (Sep 19, 2005)

Honestly, if he's having problems 50% of the time and I noticed things were starting to get worse, I think I'd do the ablation if it was my child.


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## Kidzaplenty (Jun 17, 2006)

I am glad you are having it done. I would do it, too. The heart is one thing I will not mess around with. They are not many second chances there, if any.


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## becoming (Apr 11, 2003)

I would do it. Doesn't sound elective to me.


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## chaoticzenmom (May 21, 2005)

Thanks all. I'm feeling much more centered after calling the hospital to get us scheduled. It's what I wanted to do, but I felt like I was pushing the dr. to go against his judgement. Hearing your stories tells me that I have to listen to my own and get this fixed. It's confusing to have a dr. telling you wishy-washy stuff. So, when he's telling me that it's elective, I'm thinking in my head "Like a circumcision? Or a lip enhancement? I don't think so." So, I can see now how elective may mean something completely different to him.

One-Girl, he's one of the best and is telling me stuff in code, apparently.LOL I come to MDC to get likeminded moms' opinions, not to substitute my own or the dr's, but to give me another perspective. Which I never fail to get here.

Thanks again


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## vbactivist (Oct 4, 2006)

Quote:


Originally Posted by *beanma* 
I would definitely get a second opinion. My dad had heart surgery (well actually it was for an abdominal aortic aneurysm) and it was done by one of the best doctors in the country, too, at Duke. The *thing about surgeons is they're surgeons. That's what they're trained in.*

A cardiologist is not a surgeon though. And that's who makes the decision for surgery, and then the surgeon has to agree. I found that the peds specialists are very conservative. If they say get the surgery (even calling it "elective") then I would get it. They won't do surgery unless they feeli t is necessary. good luck!


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## vbactivist (Oct 4, 2006)

Quote:


Originally Posted by *chaoticzenmom* 
Thanks all. I'm feeling much more centered after calling the hospital to get us scheduled. It's what I wanted to do, but I felt like I was pushing the dr. to go against his judgement. Hearing your stories tells me that I have to listen to my own and get this fixed. *It's confusing to have a dr. telling you wishy-washy stuff.* So, when he's telling me that it's elective, I'm thinking in my head "Like a circumcision? Or a lip enhancement? I don't think so." So, I can see now how elective may mean something completely different to him.

One-Girl, he's one of the best and is telling me stuff in code, apparently.LOL I come to MDC to get likeminded moms' opinions, not to substitute my own or the dr's, but to give me another perspective. Which I never fail to get here.

Thanks again

We also have one of the best cardiologists in the country. And we elt he was kind of wishy washy too. Like before my daughter was born, he said something about how she may need some medication after birth (he said it real low key) and in mymind I was thinking something along the lines of oral tylenol, and what she ended up needing was a central line (painful and traumatic to watch being inserted!!) with heavy duty medications that required her to be intubated until 2 days later when she had her first surgery. So I think that the low key ness might just be part of their (the cards ) make up. Hope I'm making sense. But he never seemed alarmist about what was aserious CHD, unlike the ped who acts like you are killing your child if you say not to the pertussis vaccine...


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## chaoticzenmom (May 21, 2005)

Thanks...reading my OP, I think I may have not been clear that the cardiologist doesn't want to do the surgery. He wants to keep monitoring. But says that there are good reasons to do the surgery. I wrote here confused because I want the surgery and the cardiologist doesn't really think it's necessary...yet. He's fine with the fact that we've decided to do it and has it scheduled.


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## vbactivist (Oct 4, 2006)

Quote:


Originally Posted by *chaoticzenmom* 
Thanks...reading my OP, I think I may have not been clear that the cardiologist doesn't want to do the surgery. He wants to keep monitoring. But says that there are good reasons to do the surgery. I wrote here confused because I want the surgery and the cardiologist doesn't really think it's necessary...yet. He's fine with the fact that we've decided to do it and has it scheduled.

Oh, I got that







Good luck - it will be okay. I hate when people say this, but I found it to be true - "it's way worse for you than for your child".


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## beanma (Jan 6, 2002)

Quote:


Originally Posted by *vbactivist* 
A cardiologist is not a surgeon though. And that's who makes the decision for surgery, and then the surgeon has to agree. I found that the peds specialists are very conservative. If they say get the surgery (even calling it "elective") then I would get it. They won't do surgery unless they feeli t is necessary. good luck!

That wasn't the case with my dad. My dad got referrals to Duke and another well known hospital and then consulted with the surgeon at each hospital who would perform the surgery if we decided to do it (they each had a specialty in Cardio and Thoracic surgery). It was the surgeon who advised and counseled - not a cardiologist. The cardiologist (or actually I think it was just my dad's regular physician) just made the initial referral. I went with my parents to all those appointments. I remember it well. Both of the surgeons we saw at the different hospitals left the decision up to my dad as his was "elective", too. There was no cardiologist making the decision for surgery. The surgeons ordered ultrasounds and EKGs, etc, and advised on their abilities to perform the procedures they specialized in (slightly different approaches to the same problem).

OP, good luck. I'm sure it feels better to have made a decision. Hope it goes wonderfully.


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## vbactivist (Oct 4, 2006)

Quote:


Originally Posted by *beanma* 
That wasn't the case with my dad. My dad got referrals to Duke and another well known hospital and then consulted with the surgeon at each hospital who would perform the surgery if we decided to do it (they each had a specialty in Cardio and Thoracic surgery). It was the surgeon who advised and counseled - not a cardiologist. The cardiologist (or actually I think it was just my dad's regular physician) just made the initial referral. I went with my parents to all those appointments. I remember it well. Both of the surgeons we saw at the different hospitals left the decision up to my dad as his was "elective", too. There was no cardiologist making the decision for surgery. The surgeons ordered ultrasounds and EKGs, etc, and advised on their abilities to perform the procedures they specialized in (slightly different approaches to the same problem).

OP, good luck. I'm sure it feels better to have made a decision. Hope it goes wonderfully.

I believe you that it was different for your dad







Maybe its different for peds. My daughters cardiologist did all the echos, tests, etc. Then they would have a conference with the surgeon to discuss it. I am sure of that since I am good friends with the surgical nurse practitioner. we only met the surgeon the day of the first surgery and the week of the second surgery, there was no discussing the case etc, jut going over the risks to surgery etc. maybe my daughters wasn't considered elective? I know the first one wasn't...and maybe that makes the difference?


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## Beckamomof4 (Apr 15, 2007)

I am glad you came to a decision. A decision about your child and surgery is NOT easy! You will be in my thoughst!


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## chaoticzenmom (May 21, 2005)

Surgery was done on Tuesday. His energy levels are so high now. I had no idea how much his abnormal heartbeat was affecting him. He's waking up early, going outside and playing more, just a lot more active and engaging.

There was no "elective" about it and I wish we'd done it sooner. He didn't have any pain and didn't even bruise.

Thanks again for the encouragement.
Lisa


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## KayTeeJay (Jul 22, 2008)

That's wonderful!! Thanks so much for the update. I didn't post before but followed your thread with interest. I'm so glad everything worked out!


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## Super~Single~Mama (Sep 23, 2008)

I didn't see this thread back when you started it. If I had I would have mentioned that a good friend lost her brother to this condition when he was 30 - we were in college. No one knew he had it, it was horrible.

I'm glad that you did the surgery, and even happier that your son is doing better now!!


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## lolar2 (Nov 8, 2005)

I'm glad to hear the surgery went well!


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## SeekingJoy (Apr 30, 2007)

Wonderful! Thanks for the update.


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## EFmom (Mar 16, 2002)




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## limabean (Aug 31, 2005)

What a great update!


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## HarperRose (Feb 22, 2007)

Quote:


Originally Posted by *chaoticzenmom* 
Surgery was done on Tuesday. His energy levels are so high now. I had no idea how much his abnormal heartbeat was affecting him. He's waking up early, going outside and playing more, just a lot more active and engaging.

There was no "elective" about it and I wish we'd done it sooner. He didn't have any pain and didn't even bruise.

Thanks again for the encouragement.
Lisa


What fantastic news!! So glad things went well for him.


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## Kidzaplenty (Jun 17, 2006)

That is wonderful!


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## Quinalla (May 23, 2005)

So glad to hear







thanks for updating


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## Fuamami (Mar 16, 2005)

That is awesome! So glad that you were able to do it.


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## mouso (Feb 8, 2007)

Quote:


Originally Posted by *KayTeeJay* 
That's wonderful!! Thanks so much for the update. I didn't post before but followed your thread with interest. I'm so glad everything worked out!

Me too. Great news!


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## l_olive (Jan 18, 2005)

I'm really happy for your family.


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## Aridel (Apr 25, 2004)

It's great to hear that he is doing so well!


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## ~Boudicca~ (Sep 7, 2005)

Oh wow! What good news!


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## oceanbaby (Nov 19, 2001)

I was just coming to post that I definitely think that he should have the surgery, and I'm so glad it went well.

Ds1 had very enlarged tonsils and adenoids starting when he was about 2.5/3yo, to the point where his growth was being stunted by severe sleep apnea. I agonized over having them removed, convinced that I could treat it with elimination diets, supplements, etc. And maybe I could have, but in the year that I spent trying, nothing changed. We had the surgery, and it was the best decision we ever made. He immediately was able to sleep, had a sense of smell for the first time, was better behaved (because he wasn't so tired) and didn't get sick as often.

It can be hard when you're on the natural/"crunchy" route because something like surgery really throws you for a loop, makes you think you have failed. But we have to listen to our instincts, and I'm so glad everything worked out for all of you.


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## aran (Feb 9, 2005)

What happy news!!!!


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