New here! Heart surgery soon for stepson and question on CoQ10

[sarahsunshine]

Hi! I’m new here.

My 12yo step son is to have surgery in the next couple months to replace his mechanical mitral valve, and possibly his aortic valve or a Ross procedure.

I was wondering if there is anyone here who has information about CoQ10, as I have read that it has helped many recover both short and long term. Does anyone have any dose information?

 

[Duffey]

I don't have information about it. You might try a search using CoQ10 as the entry; however, I wonder if it interacts with coumadin if he receives another mechanical valve?
I imagine his recovery will benefit from his younger age. Hopefully some heart moms will chime in soon to offer their thoughts.
In the meantime, glad you've joined us!:smile2:

 

[sarahsunshine]

Thanks for the welcome! I'll try that.

So far it hasn't affected warfarin noticeably, and he's been taking at a supplement for years. CoQ10 is recommended by several hospitals, for pre-surgery.

 

[Duffey]

In your other post, you mention that his INR has been hard to control. I would consider the possibility that the CoQ10 might be affecting it until you learn differently. I don't take coumadin, so I don't know, but you might post the question in the ACT forum.

 

[ElectLive]

According to my cardiologist, and several studies I've seen at respectable heart hospitals, use of CoQ10 is by no means an established medical practice. At the very least, it's still controversial. Some studies question the general effectiveness, others questions the overall benefit even with effectiveness. One line of thought I've read is that supplementing low CoQ10 levels may actually further suppress a patient's own already low levels.

But back to your question, for those hospitals you're aware of that do recommend it, consulting a cardiologist probably makes good sense relative to dosage.

For reference, here's one source of information: http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10/METHOD=print&DSECTION=all

 

[sarahsunshine]

Did I say it was hard to control?

It’s been relatively easy. The only times it has been hard to control is when he takes too low a does, despite being told many times by dad (who does all the testing) what dose should be.

Stepson takes tons of supplements (and it has been decreased recently because of dad's dislike of supplement dependence). HI’m not averse to supplements, we're just averse to cocktails of stuff that teach a growing boy that your health comes from pills rather than eating healthy (he only ate KD and pizza when I met him at age 6)!

 

[Duffey]

Did I say it was hard to control?

It’s been relatively easy. The only times it has been hard to control is when his mother deliberately gives him too low a does, despite being told many times by dad (who does all the testing) what dose should be.

You didn't say it was difficult to control. You said:
He’s already trying no to take the right dose so his INRs are too low relatively frequently, not to mention it’s tough to monitor it when he lives one week at one house, one week at the other, and his mom doesn’t give him the right dose and gives him Ibuprofen).
I consider that difficult to control and potentially dangerous.

 

[Jkm7]

Treatment and medication (be it Rx or over the counter) of a young man with heart issues is not the place for family arguments but I'm sure you know that.

Of all the things you need to be in agreement about is to follow his doctors' instructions.
If it takes a court order, so be it.
If you must show he is not being taken care of properly, so be it. He has to depend upon the adults in his life to be concerned he gets the best and most appropriate care possible.

Wishing you and your family all the best but no one here is likely to be able to give safe advise as to whether your step son should be taking supplements and/or dose of same.

Sorry to be so blunt but when it comes to kids, I can't help it.
PLEASE consult and follow the instructions of his doctors and do what you need to for assuring all involved in his care follow doctors' orders. Messing around with ACT and coumadin dosing is VERY dangerous. VERY dangerous. I see you are a scientist, a biologist. That might be an advantage in dealing with natural treatments/supplements?

 

[sarahsunshine]

Treatment and medication (be it Rx or over the counter) of a young man with heart issues is not the place for family arguments but I'm sure you know that.

Of all the things you need to be in agreement about is to follow his doctors' instructions.
If it takes a court order, so be it.
If you must show he is not being taken care of properly, so be it. He has to depend upon the adults in his life to be concerned he gets the best and most appropriate care possible.

Wishing you and your family all the best but no one here is likely to be able to give safe advise as to whether your step son should be taking supplements and/or dose of same.

Sorry to be so blunt but when it comes to kids, I can't help it.
PLEASE consult and follow the instructions of his doctors and do what you need to for assuring all involved in his care follow doctors' orders. Messing around with ACT and coumadin dosing is VERY dangerous. VERY dangerous. I see you are a scientist, a biologist. That might be an advantage in dealing with natural treatments/supplements?

I totally agree... Biomom is a "health consultant" dealing in alternative medications and considers herself an expert... No degrees or diplomas of any sort. I do believe there is a place for supplements, but this is a dangerous way to play games - especially when not done consistently, or even communicated to the other house. Son, also believes (as a son should) that his mom is a goddess and will believe anything she says about supplements, doses and medicines, so that makes it even tougher (ibuprofen).

 

[Freddie]

I might be combining your two threads.....(oh well)

I think it's a must for you to e-mail or talk to your step-son cardio and doctors and tell him/her exactly what your above post says, also mention how the warfarin dosage is being altered with the ex-wife.

Another member named Zipper2 also had surgery done at U of A and the doctor/staff responded very well to phone calls and e-mails that were sent.

Don't sit on the fence with these issues, take the bull by the horns, educate yourself (which sounds like you already have done) and let the ex-wife know that the two of you (plus hubby) need to work as a team.

Your step-son needs to know exactly how warfarin works.....when taken properly or missed used. Let him read it for himself. Try to have him understand that your not the wicked step-mom. You want him to be healthy and to be safe when using this medication. This is one med that needs to be taken properly.

 

[Duff Man]

I won't take it because I'm not comfortable with the potential adverse outcome of sudden death from a clot that could form when my INR becomes too low.

CoQ10 is said to be structurally similar to Vitamin K. While the levels of CoQ10 might be low in a person with heart disease, it's important to understand that correlation does not equate to causation. The medical community hasn't passed the stage of discerning whether a lack of the chemical is causative, from what I've seen.

It's also important to realize that while this drug may have SOME benefit for SOME people, your son has a very, very intricate, delicate, specific condition that I would dare not make him the guinea pig with. Unless there are specific studies for valvers that show a survival benefit, I would be cautious.

here's coenzyme q10:

here's vitamin k:

 

[Ray Norsworthy]

I can't & won't recommend any supplement or drug, but I can tell you my own experience. I've been taking CoQ10 for years & I never stopped it for the AVR. According to my surgeon, I had the fastest recovery of anyone in his 20 plus years of heart surgery. Whether the C0Q10 contributed to that I have no idea, but obviously it didn't hurt. As soon as I was home, I started taking it again & my Coumadin levels have been consistently good. Like the others in this thread I would urge great caution, because of course, we're all different & I was strong as a bull before the surgery.