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Need help making a decision /DONE update 62

post #1 of 78
Thread Starter 
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
post #2 of 78
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.
post #3 of 78
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
post #4 of 78
Thread Starter 
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.
post #5 of 78
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.
post #6 of 78
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!
post #7 of 78

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.

 


Edited by veganone - 9/4/13 at 2:31pm
post #8 of 78
Thread Starter 
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.
post #9 of 78
Will this get better on its own or is it just a question of *when* he has surgery not really *if*?
post #10 of 78
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.
post #11 of 78
Thread Starter 
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?"
post #12 of 78
No one is saying for the child to make the decisions he is just involved in the discussion.
post #13 of 78
Quote:
Originally Posted by chaoticzenmom View Post
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.
post #14 of 78
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.
post #15 of 78
Thread Starter 
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.
post #16 of 78
I would probably have the surgery.
post #17 of 78
Quote:
Originally Posted by chaoticzenmom View Post
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.
post #18 of 78
Quote:
Originally Posted by chaoticzenmom View Post
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.
post #19 of 78
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.
post #20 of 78
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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