my son has a BAV too

[Marguerite53]

yes the insurance problem

yes the insurance problem

Francie. That is exactly why I paid cash up front (hey, I got a discount from them because they did not have to bill me! 20%!! ). It never goes through insurance that way. Luckily, my daughter's echo was normal. But it is the life insurance that makes me hesitate the most for my sons. I know, I'm a liberated woman, but there's still quite a glass ceiling out there, and if my sons are going to be the head of the household someday, I don't want their ability to get life insurance hampered by me worrying unnecessarily. Neither one of them are particularly athletic. I've told them what to watch out for and stay away from. Of course, the endocarditis is a real concern that I have no solution for at this point. They go unprotected to the dentist. (as did I until I was 26)

My middle child is so tall and skinny and blonde and kind of bendable every which way. And flat footed. I wonder if I should worry about Marfan's. I honestly havent read much about that. I recall looking over the descriptors and so many did not fit.....??

This is a good thread. Thanks to all!

Marguerite

 

[dmoses1]

So Weird!!!!

So Weird!!!!

It's so weird that you guys brought this up. A doctor nurse mentioned that she'd heard a heart murmur when I was about 24. She called in the doctor to listen, and he said it was innocent.

About 6 exhausting years (and 2 children) later, I went to a PCP who said he heard a murmur and that it was probably MVP. He ordered an echo--nothing showed up (the technician was about 19 yrs. old).He put me on Inderal for the PVC's, then retired before he could get to the bottom of it.

I became pregnant with my 3rd child, so I had to get of the Inderal. My OB/GYN sent me to a cardiologist who listened to my heart, had me raise my arms and legs, and something else stupid (I don't remember), then said, "There's nothing wrong with you."

Every few years, or so (when I'd get a new PCP--insurance), I would tell them my symptoms and hope they would take me seriously. Responses ranged from from, "You just need to exercise," to "You have anxiety."

I tried to exercise and took medication for anxiety. That didn't help. (Not to mention I didn't feel much worse, physically, when stressful events occured in my life.

This summer I spoke to my PCP about our upcoming family vacation to Disney. I started to cry as I explained to her how much I dreaded going, saying: "I can hardly breathe and I feel like I'm dragging myself along. My children want to talk with me, but I have tell them I can't because I'm trying to breathe--and I barely have enough energy to carry myself."

When I finished explaining the symptoms (SOB, fatigue, swelling in my hands, face, feet and ankles), she told me I needed to have my heart checked (she was wonderful).

I took the echo, then the stress echo, and the cardiologist said I had a "mild leaky valve" and refused to answer any questions. She put me on Norvasc for hypertension (the highest dose--and my BP's not even that high), and sent me packing. She didn't even tell me to take antibiotics before going to the dentist.

Fortunately, I called my PCP who checked my test results from the cardio and had the nurse call in a prescription for me. She seemed pretty concerned with the results, by the way.

Moral: We should pool our resources, go to medical school, and open clinics all over the world for patients who can't pay, have disappearing symptoms, or any other circumstances that don't fit neatly in a box.


Sorry this is so long; but 15 years takes a long time to tell about.

 

[aussigal]

Its too-bad that you guys dont have a similar system to us when it comes to getting stuff done for the kiddies ...hopefully the fact that they have been insured under our health-insurance will mean they dont lose any benefits when they are old-enuf to pay for themselves.

Steve, the first found to have BAV has already had major-dental work on his 2 front teeth that he managed to break-off ...so at least I can get him the prophylactic anti-B's now before any more such procedures, even tho I managed to live 35 years without em ...I was a sickly child lots of ear and throat stuff.

...I have the other 2 boys booked in for Tuesday for their echocardiogram .

I love your idea of pooling- resources to open a medical centre for those who have tricky-cases and/or cant afford medical costs...I am appalled at the prices you guys get charged...

And I dont like this merry-go-round/cum rollercoaster ride the medicos gets us on. ...why are they so scared of us pro-active patients.

better go get a lottery ticket now!

 

[aussigal]

ok we are back from the round of echo's...Ben 'middle-son' is all-clear
Matt , my oldest boy has the BAV as well
so we got hit twice with the BAV stick the youngest and oldest ...
feeling a little guilty here...but I do know their prognosis is very good cos they are modern kids not like they had to wait til they were 40 and had done 40 years of stuff that wouldnt be good for them...PHEW!...
and at 10 and almost 15 they are old enough to learn what they can and cant do and be responsible for this as well..

hope you all have better results than we got.

 

[Marguerite53]

sorry

sorry

Sorry to hear that your oldest has a BAV as well. However, please do not consider indulging in one ounce of guilt. You have taken careful measure and time to seek out an invisible danger. Your remarks will help others here decide what to do with their own offspring. You've been wonderful!!

As far as the collective pooling of resources idea, my 3 were so burdened with ear and sinus infections as little children (Oregon, lots of mold here) that one friend's quip hit the mark for that one.........there should be drive up windows where the child sticks his ear out or gets a throat swab, and pop! instant read on the bacterial flora....no more waiting in sickly waiting rooms, no more fidgetty healthy siblings.......instant read, instant Rx. Wouldn't that be great?

Now I may need to rethink my plan. Perhaps the most worrisome thing is the dental visit problem. Staving off the endocarditis. I do know that my daughter's GP wrote me an Rx for my daughter's dental visit before I had her echo done, when I was at the height of emotional tension about her. Perhaps what I'll do is see to it that my son's have an Rx for each dental visit. I hate to abuse antibiotics, but the alternative is worse. Nowadays it's just a huge one-time hit of a dose anyway. Right? My Rx is for one hour before and is a double the normal dose. Does anyone else have a different prescription? It used to be follow up doses were required.

Thanks again for this thread.

Marguerite

 

[aussigal]

Our Dentists here in Australia give out the anti-B's makes it easy and one less appointment...

I do hope I inspire any scared mums and dads out there to be pro-active in chasing up their kids' health...we would never have picked the older boy as having this . He is a big strappping almost 15 yr old who indulges in all sorts of skating and mountainbiking activities-very busy kid ..

Interestingly , he and the youngest (the BAVD boys) had that Asthma-like wheeze when they were toddlers and yet the other-one didnt ...and we were all attended by my long-time (15 years) Dr in my home-town who had listened carefully for my murmur for years and never ever heard it .

Maybe now might be a good time to write him a note and transfer my records over here and let him know what he missed out on .

Am remaining positive about it all..you gotta especially when the kids have it too...these 2 have an interesting outlook on it at the moment..steve wants the zipper surgery, he wants to be frozen-dead and come back to life as a ghost as any 10 year old would ...and matt couldnt really care-less just usual grumpy teenager.

 

[Karen]

still pondering...

still pondering...

Annie, you bring up a good point about the endocarditis, especially given your family's experience with it. I hope I'm not being too dismissive about that part. I wasn't diagnosed with the bicuspid valve until I was 51 years old. I had many procedures in those years that would have required prophylactic antibiotics had we known about the valve. In fact, my current dentist doesn't require the antibiotics for my normal cleaning appointments since I have had NO bleeding issues in the last couple of cleanings. (My previous dentist would not do anything without antibiotics AFTER the bicuspid diagnosis). So now I think about Marguerite's suggestion to have the antibiotics for the kids even without a positive diagnosis on them. But who would do that? My dentists also write the antibiotic prescriptions, but I don't think they'd do it for my kids without a diagnosis.

By the way, I just talked with my health insurance company. Our insurance provider WILL cover the cost of an echo if the cardio wants to rule out this anomaly in any of our children. Mary, it's your experience with you son NOT having an audible murmur that keeps me concerned for my twin who had a murmur 15 years ago, but none detected now.

Now the question is, how badly do we want to know at this point? My twins are both pre-med students. Another son is just finishing dental school. With all the school debt that he has acquired, I (and his wife!) have been very grateful that he has an adequate life insurance policy. I think I'd still like to wait until they are out of school and have at least some stability with insurance coverage etc.

Aussigal, you have kept us thinking! Best wishes to us all as we continue to think through our choices...

Karen

 

[delvalle6]

My son has a BAV and there is no family history. I get mixed answers, but they think there was an "antagonist" when he was developing, which would probably be the slight twin to twin transference I had when they were in the womb. I guess the BAV isn't always genetic.
As for the dissapearing murmur- I have that. I've had an echo and no defects were seen in the valve. I do have what they call a "benign irregular heartbeat". No treatment, no follow up.
I am fully convinced that the level of care you recieve is wholly based on your insurance provider or financial status.

 

[sherry8484]

Hello All, I have been reading the post and I fianlly wanted to say hello and give you all information on my 17 year old son. Has a bicuspid aortic valve. They ballon dialated it when he was 6 to avoid open heart surgery. He now has moderate/severe stenosis, moderate/severe regurgitation. He has left ventricular hypertrophy and a 4.5 ascending aorta. Not for sure if that is aneurysm yet??? Tyler is my son and he is seeing cardio. doctors at Texas Childrens in Houston Texas. The last 2 years the doctor has had a lets wait and see approach. He will have NO insurance after Dec. 31. I was wondering if I should bring this up to his next Dr. Visit on 8/4/09. I have a feeling he will want to schedule the surgery he needs (Aortic root replacement with aortic valve replacement, PIGS valve) after insurance expires. The Dr. states he is close to surgery but can't say when. I have also told my son that he has people to talk to. So any input/comments or suggestions would be wonderful. I have to say, this is a great site. Im praying for every one of you.
Blessings,
Sherry