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Cindy!
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Does anyone know first hand or through experience with family or friends what a Congenital Bicuspid Aortic Valve is?

My son was diagnosed with this yesterday, and while the hospital gave me literature on it....I would really like as much information on it as I can get!!!

We were at the hospital for HOURS yesterday while they did test after test....he is very active in sports.....the dr. said he can continue, but that we should get him checked by a pediatric cardiologist once a year, every year and report any chest pains and shortness of breath. He also suggested that we get our other three children tested...and we certainly WILL.

I read the article the dr gave me....but as a mom....I still want/need more information!!!!!!!!!!!!!!!!!!!!!!!!!!!

Edited by Cindy!
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I don't know anything about that condition but I still remember how to pray.

(And you can't stop me!) :)

Me, too. (My sister is a doctor, and after she was diagnosed with cancer, I have been learning each of us is called to do only what we can.)

Still praying for you and yours :)

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I would check some websites of children's hospital. The one here in Cols. is Nationwide children's Hospital and I know they have a website where you can ask questions. There's a good children's hospital in Cleveland also and I think Cincinnati has one.

Never having worked in cardiology, I have no idea. I expect you were at a cardiologist's office when you got this information. WebMD is good with explanations, but I think you have to join.

I also will be praying.

WG

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Hiya Cindy! Remember me? I used to be ArkieRon back in the day.

I know what it is, but I don't know much about it. It means there's two flaps in the aorta root instead of three. Besides that, I just know that it CAN lead to a blockage or slowing of blood flow.

I'm not a doctor nor am I any sort of medical professional...not even an amateur nor did I ever stay at a Holiday Inn. I'm also a terrible patient and a number of cardiologists in Texas, California and Arkansas will eagerly attest to that.

All I can say is I would belay that suggestion that he be monitored once a year and DEMAND at least TWICE a year. Find another cardiologist and seek a second opinion. I wouldn't say the doc you have now is wrong or bad, just two heads are better than one, and it's YOUR son.

PLEASE NOTE: THIS IS JUST MY OPINION ON THE MATTER!!! I would make certain he isn't exposed to strep or rheumatic fever. I would treat him to antibiotics prior to any invasive dental work or surgery, no matter how minor. Endocarditis (heart valve infection..usually strep) is an unpleasant scenario that almost took my life many years ago. It can and usually does do permanent damage to the affected valve and when there's blockage (stenosis) of blood flow, the blood doesn't cleanse the valves properly, causing bacteria to settle and infect the valve. If he (or you) notices he's getting more short winded than usual or retaining water (swelling in the ankles)...or if he seems to have a lingering low grade fever i.e. "slight temperature", get very excited and take him to the cardiologist, pronto!

I was born with an aortic malformation, although it's not the same as your sons. However, it can do some of the same things. When I was seven or so, I came down with the measles, which wasn't all that uncommon back then, and was laid up for a couple of weeks. The fevers led to all sorts of cardio complications that I didn't know about until I went for my physical when registering for the draft.

The docs quickly classified me 4F which meant I would go AFTER the women and children. (See? there's a silver lining to every cloud!)

Basically, just USE the docs and the system to the max and don't take any chances. So what if they think you're a cranky lady that gets overly protective of her kid. Fuggem! He's still young and a little prevention now could save him much misery and aggravation later in life. That much I do know.

If you work at it, you can get all sorts of good medical care as hospitals just LOVE people like your son so they can send interns and students to prod and poke him.

It might not hurt for you and his siblings to get an echocardiogram one of these days. The word "congenital" means something, too, ya know.

Of course, like everyone else, my prayers are with you and yours.

Edited by Ron G.
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I found out I have that valve defect about 16 years ago.

Here's what I was told:

Don't gain weight becasue of the additional strain on the heart,

Be more vigilant about cholesterol levels and keep them low. I take fish oil religiously.

Be aware of continued fatigue and let doc know because valve may be leaking and need replacement,

Get antibiotics before dental appointments. My dentist told me that the guidelines have changed and that I don't need to get antibiotics before dental visits, but my doctor doesn't agree and continues to prescribe them. I will keep up with the antibiotics until doc tells me otherwise.

I was told I would probably need to get the valve replaced when I am in my 60s. They replace the valve with the valve from a pig's heart, I hear. I'll be 51 in a few months and haven't noticed any fatique symptoms yet and only think about the defect when I get the antibiotics for dental appointments.

Your son is lucky that he has someone who cares so much and will take care of him. Chances are he'll be just fine.

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'course I remember you, Ron! Thanks for the great advice!

Scout....fish oil....good suggestion, thanks!

I took my son to a pediatric cardiologist who has an excellent reputation and I also got the ultra sound report and images and took em to another excellent doctor, and it was confirmed.

I had just had an echo and a stress echo, so I'm clear....gonna take my other three kids in very soon.

Was kinda scary at first, but I've gotten a lot of info since then and now know about what to do and what to look for.

Havin kids truly is having your heart walking around outside of your body.

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