testing the kids for BAVD?

[aussigal]

OK...I am curious what do you suppose would be the most reliable detector of BAVD in kids?...our boys are 10,13,14 ? ad have never been screened for this, my Doctor wrote a referral for a spiral Thoracic aorta CT angiogram with contrast ...Now is that going overboard , thought they were more for aneurysms? not detecting Bicuspid valves ?
I would have preferred an echo at first ,,,I am wondering if he mis-understood me cos I had my CT results there so he could take a copy for my general file...maybe he didnt know i had an echo years ago that showed this up???...now I'm confused

 

[Mary]

Two of my five kids have had echos looking for a bicuspid valve. One has it; the other doesn't.

 

[Ross]

CT seems like overkill, but maybe he also wants to look at some other things as well?

 

[afraidofsurgery]

Echo for daughter

Echo for daughter

When I was pregnant with my daughter (about 6 mos I think), my OB/GYN had a pediatric cardiologist do an in-utero echo w/ doppler!! At the time I didn't even know that there was such a thing as "left ventricle defects", so that was new to me. It was really an ultrasound but w/ doppler, so they were looking for a leak - same info as from an echo.

She has an absolutely perfect heart, so I was/am relieved.

And yeah, that there "spiral Thoracic aorta CT angiogram with contrast" sounds like the kids would be exposed to unnecessary risk associated w/ the angiogram, when really if there's no leak, wouldn't that be sufficient to know at this point?? My femoral artery and vein are still hurting from my pre-surgical angiogram!

Patty

 

[aussigal]

ohhh good I am glad you guys think a CT is overkill at this stage cos I kinda did too ...
I will go back and ask him to make it an echo please .

..as this is just the Family Doctor and I am not sure how far his knowledge of this particular defect goes aprt from its Rarity ! ...

He did however give me a referral to another Cardio doc. for a second opinion on me and my aorta so thats one bit I got right today at least...
Thanks all

 

[msiwik]

Excellent Question - Screening Kids

Excellent Question - Screening Kids

ohhh good I am glad you guys think a CT is overkill at this stage cos I kinda did too ...
I will go back and ask him to make it an echo please .

..as this is just the Family Doctor and I am not sure how far his knowledge of this particular defect goes aprt from its Rarity ! ...

He did however give me a referral to another Cardio doc. for a second opinion on me and my aorta so thats one bit I got right today at least...
Thanks all

Your question is an excellent one. I have two children, 11 and 9, and both run and are very athletic too. I am not sure when to have them undergo an echo. I would be curious to see what other parents have done.

 

[aussigal]

Questions are my speciality ...
why else would I be up at midnight with a back in spasm still ignoring it surfing the web for answers...

Out of our 3 boys I would pick 1 of them automatically for this and another is a possibility the oldest one is the one I would say in my non-expert opinion has the best chance of having avoided this...too many Marfanoid characteristics in the other 2 to ignore...

better go to bed and dream up some new questions for tomorrow...
nite all

 

[PJmomrunner]

Both my kids had echos and I was told they were both normal . I got copies of the echos for future comparison if that ever becomes desirable.

 

[msiwik]

Both my kids had echos and I was told they were both normal . I got copies of the echos for future comparison if that ever becomes desirable.

How old are your kids? I did ask the same question of the the BAV Foundation and then sent me the following reply:

"There are various thoughts about when to screen children. Suggestions include screening in late teens, before they enter college, to screening earlier. Typically if a murmur is heard, they follow up with an echo, but we know that many BAVs are silent. Families who have lost a loved one are clearly very concerned and proactive about screening everyone, including their children! I hope that clearer guidelines will emerge. Echocardiograms are sound waves so this test can safely be done on children. Echos do not detect all BAVs, but are a safe first step. An echo can give an indication of the aortic root and the ascending aorta size, if the technician is specifically asked to scan the ascending aorta. There are reports in the medical literature of BAVD families where the aortic valve appeared normal, yet the individual developed an aortic aneurysm."

 

[Mary]

How old are your kids? I did ask the same question of the the BAV Foundation and then sent me the following reply:

"There are various thoughts about when to screen children. Suggestions include screening in late teens, before they enter college, to screening earlier. Typically if a murmur is heard, they follow up with an echo, but we know that many BAVs are silent. Families who have lost a loved one are clearly very concerned and proactive about screening everyone, including their children! I hope that clearer guidelines will emerge. Echocardiograms are sound waves so this test can safely be done on children. Echos do not detect all BAVs, but are a safe first step. An echo can give an indication of the aortic root and the ascending aorta size, if the technician is specifically asked to scan the ascending aorta. There are reports in the medical literature of BAVD families where the aortic valve appeared normal, yet the individual developed an aortic aneurysm."

In our situation, I just developed my murmur in 2001. Once I learned it was most probably a bicuspid I asked our family GP about screening our two teenage boys.
One son had his echo first because he was born with a murmur that seemed to disappear when he was about 8 years old. He did indeed have a bicuspid valve. The other son had an echo run when he developed symptoms during his cross country running. His echo showed no bicuspid but he did have some right heart enlargement. He will have a repeat echo next month to see if the enlargement was caused by his running.

The other children were out on their own by the time we discovered we had BAVD in the family. They are aware of it and have made their doctors aware of it.

 

[msiwik]

thank you for info on kid testing

thank you for info on kid testing

In our situation, I just developed my murmur in 2001. Once I learned it was most probably a bicuspid I asked our family GP about screening our two teenage boys. One son had his echo first because he was born with a murmur that seemed to disappear when he was about 8 years old. He did indeed have a bicuspid valve. The other son had an echo run when he developed symptoms during his cross country running. His echo showed no bicuspid but he did have some right heart enlargement. He will have a repeat echo next month to see if the enlargement was caused by his running. The other children were out on their own by the time we discovered we had BAVD in the family. They are aware of it and have made their doctors aware of it.

My wife and I talked at lunch and have decided to have echos done now. Thanks for sharing!

 

[PJmomrunner]

My kids are 13 and 15. They were given echo exams that included their ascending aortas (I was told that peds exams include extra views like this). Although they have been declared normal (and they looked normal to me, but what do I know?), I don't feel I can be sure because of the variable expression of BAD. (Bum valve and aorta, bum valve, bum aorta) I also believe it's possible the echo might be interpreted differently by an aortic or valve specialist, so I thought I'd have it on hand in case one of my kids develops "issues" later in life. Heck, maybe I'll ask my surgeon to take a look...

 

[Natanni]

Echos and kids

Echos and kids

When my husband was diagnosed with bacterial endocarditis the Mayo suggested I get my kids checked with echos for bicuspid valves. I brought them into our local pediatrician (who also has a bicuspid valve as does his son) and he listened to my son (14 ) closely for a murmur, and there was none. Then he listened to my daughter (9, she has here Daddy's looks, height and build) and he did hear a faint murmur, and then he listened to Nathan's mumur. This pediatrician was also my husbands doc as a child so I feel he has a pretty good idea of comparing the two. This was the first time anyone has ever heard a murmur with her before and my husband's was noted at birth so I am hoping that hers, even if it turns out to be a bicuspid valve, may not be as significant in her life. Will be getting an echo with my daughter soon, but as it is now, we doing the BE prevention and the ped said let her do any activities (she figure skates) that she wants.

 

[francie12]

Screening Kids/Insurance Coverage

Screening Kids/Insurance Coverage

I was wondering--for all those of you who have had your kids screened for BAVD--did you get your insurance to cover it? I have a ten yr.-old with no murmer, no family history other than his big brother, Matt. I would like to have him screened, but finances are tight, medical bills already high. The last word from drs. is to wait to see how quickly Matt's condition is progressing and if it does progress significantly order an echo for Dave (10 yr.-old brother), presumably covered by insurance. I don't quite understand this logic given the fact that he could have the funky aortic valve or dilated aorta whether his brother's condition is progressing or not. The lack of a murmer is reassuring--but he could still have a bicuspid valve, need dental prophylaxis, follow-up, etc. Has anyone in similar circumstances gotten their insurance to cover?

 

[Mary]

I was wondering--for all those of you who have had your kids screened for BAVD--did you get your insurance to cover it? I have a ten yr.-old with no murmer, no family history other than his big brother, Matt. I would like to have him screened, but finances are tight, medical bills already high. The last word from drs. is to wait to see how quickly Matt's condition is progressing and if it does progress significantly order an echo for Dave (10 yr.-old brother), presumably covered by insurance. I don't quite understand this logic given the fact that he could have the funky aortic valve or dilated aorta whether his brother's condition is progressing or not. The lack of a murmer is reassuring--but he could still have a bicuspid valve, need dental prophylaxis, follow-up, etc. Has anyone in similar circumstances gotten their insurance to cover?

Both boys' echos were covered by insurance. With one, we were going with a previously heard murmur and the other was showing some symptoms that might have been valve related (but weren't). You can always ask to have the echo precertified; then you would know in advance if it was going to be covered or not.

 

[PJmomrunner]

Echos for both my kids were covered. The doc wrote "family history of aortic disease" as the diagnosis. I was told all first degree relatives should be checked--if having a brother with BAV is not "family history" I don't know what is.

 

[BAV Pt's daughter]

I just had an echo done to check for BAV as well, mine was covered by insurance, but I've been told I have a murmur in the past. Too bad they couldn't really tell me for sure... Apparently I'm too skinny, not enough room between my ribs for a good enough view, MRI or CT recommended by mom's surgeon when we go there next week... Though I doubt that will be first thing on my mind at the time. Good luck with your children though. They said normally they have no problem even with "little people" they just tried and tried and tried and could not get the right view of the valve on me.

 

[Marguerite53]

paid cash

paid cash

I have 3 children, in college. One is the athlete and I had her screened as she is now playing her sport in college. Because there was no murmur or symptoms the insurance company would not cover it, and the doctor would not help out. I had to pay cash. It was very expensive. However, it will not be seen by insurers either and since she is only 18, I am glad that it will be kept a private screening. She checked out fine. I cannot tell you how beautiful a clear and vibrant Mercedes Benz symbol is when you know the probe is connected to your child! all other valves/measures checked out fine.

I am concerned about my other two but as they are showing no symptoms or registering any murmur I'm content to wait awhile. The oldest is in grad school with a Med school attached and I'm hoping he can weasel his way into a free echo while he's there for 5 years. He is not in the Med school. Eventually I will probably pay to have them each screened privately. For now any time they see a doctor for anything they have been instructed to remind the doctor that there is BAV in the family and to listen carefully to their heart. We have excellent doctors with sophisticated new offices and instruments and I am placing my confidence in them.

If your insurance will pay, I'd definitely go for it. Knowledge is power.

Keep us posted!

Marguerite

 

[BIGHEARTED]

Getting Them To Go

Getting Them To Go

Hi all - I have been reading this thread with interest as I am trying to get my kids to get checked. When I was diagnosed 5 years ago with a BAV and aortic aneurysm I was advised to have my children and siblings checked. My oldest son was the only one who actually went, my other 2 children, 2 brothers and 3 sisters all refused. My son first had an echo, then a transesophegeol echo and finally a catherization. They didn't find a BAV but his heart was enlarged and they were looking for the cause. It turned out he had a atrial septal defect in the upper sinus. He had open heart surgery at the Cleveland Clinic in April and is doing great. Better than before. He always was athletic and is back to running and playing basketball, and golfing. He never knew how bad he felt before until now. My daughter is a runner also and says she will go, but still hasn't. My youngest son is the one I am really worried about because they detected a heart murmur when he was little and he is a heavy smoker. The problem is, these are all young adults and I can no longer force them to go. I've been nagging the two younger kids (and my brothers and sisters) but they still refuse to go. Any suggestions. Leny

 

[francie12]

Our insurance, Blue Cross/Blue Shield, has already refused to pay for a screening echo for Dave (10 yr.-old brother of BAVD Matt) unless there is either a murmer or symptoms. Short of lying and faking symptoms (not a great example for children), we are stuck with paying the full cost or living with the worry and uncertainty. Frustrating! Especially when it seems that other companies have the foresight to cover this. I'm going to pursue it further at the next appointment, but if anyone has any advice on the right way to approach insurance companies--much obliged!