S/W Pediatrician re: testing kiddies for BAVD

[Chrisandgary]

Some of you had IMed me regarding BAVD and testing children. I hadnt planned on doing anything until Garys surgery 8/23 was behind us - but we ended up at the pediatrician for my oldest who had swimmers ear. I told him the basics of Garys disease and that he is on route to his 3rd OHS and what does this mean for my children? Could I have a baseline echo done and then maybe 1 in five years. He said NO! I am aghast! He said to make sure I bring them every year for their physicals and watch them closely. Sometimes if they do an echo it is a false safety net and I may not follow up with their annual checkups. I said "Come on, you know how diligent and neurotic I am I would never do that."
So that is where I am at. We need the mini echo here - I think that is a great idea and should be nationwide.
I will keep you updated on this - but I wont be doing anything about it until Gary is well into recovery. Does anyone else have thoughts on this? Have you paid yourself for having children tested?
Christine

 

[terryj]

My 6 month old grandson was in Scottish Rite last month with multiple medical problems. In the search to find out what was causing his breathing difficulties they questioned the family members about possible medical problems that could be inherited. When we told them my husband had a bicuspid valve they did a echo to check for that. It was not bicuspid. The doctor said he thought it was a good idea to have children and grandchildren of my husband at least watched for signs of valve problems. He said to be sure and tell their pediatricians to listen for heart murmurs. My husband has a 1st and 2nd cousin who had bicuspid valves and had valve replacements. On, a side note this doctor also said he had a bicuspid valve and had valve replacement.

 

[Mary]

When my kids were teen-agers, actually 17 and 19, my family practice doctor wrote orders for echos. One of the boys had a murmur at birth that disappeared with time. He was checked regularly by the pediatrician, but the pediatrician didn't catch his bicuspid valve. It took the echo ordered by the GP to diagnose it.

Luckily our other son doesn't have a bicuspid, but he does have some right ventricular enlargement that they will recheck, with an echo, in a few months.
That's only two of the kids; the other three are on their own, but they always include the family medical history when they see the doctor.

I think your pediatrician is making a mistake by not ordering the echo.

 

[cocoalab]

I have mixed feelings about echos for checking apparently healthy children. They are expensive tests and even with ,insurance covering them we pay for them in premiums and such.

I have three children. my oldest was diagnosed at a kindergarten check up with a heart murrmer and sent for an echo. He ended up having a rather complex heart defect. My other two have never had an echo though it has crossed my mind from time to time to ask for one just for peace of mind. I have the same doctors check them out for physicals and such.

A good friend of mine found out at age 40 that she had a very large VSD and had it closed with an aplaztar devise shortly after wards. She did eventually have her two kids checked out just for peace of mind and they are both fine.

It is a complex thing to decide who needs echos and who do not. Not only is there the money issues but there are only so many cardiologists to read all these echos. It is something to consider.

 

[francie12]

Hi, Christine-- Thanks for your PM. Our pediatrician scheduled an appointment for Matt with a pediatric geneticist/connective tissues disorders clinic to rule out Marfan Syndrome. While answering lengthy pre-visit questions with her nurse on the phone, I mentioned the fact that our insurance will not pay to have a screening echo done for Matt's little brother, even though pediatrician advises it. She suggested I bring it up the Dr. at the appointment, which I intend to do. If this works I will let you know as maybe you could go a similar route. When I asked about the NOTCH1 gene she mentioned other genetic BAV related syndromes of which I was not aware--seems like enough evidence to warrant testing family members.

All the Best,

Jane

 

[KathyAntonelli]

Hi Christine:

My dad died of a massive heart attack at the age of 50, his dad at the age of 58 and my uncle at 70 (all of heart disease). And my mom had a bicuspid valve, severe regurgitation, aortic stenosis and atrial fib, which necessitated her AVR and the maize procedure. So the heart history is on both sides of my family. My brother goes to a cardiologist once a year and has had echos performed as ell as some kind of a a nuclear test. I have also been seeing a cardiologist with the family history and so far they have only given me a stress echo and checking my cholesterol. I do have high cholesterol but they don't want to put me on medicine just yet. I am 40 years old, in good health, low blood pressure, a high HDL level and not overweight so they don't want to start me on it just yet. But I insist on going every year to see if there are any changes. I have talked to the pediatrician about the heart history in my family but they haven't suggested any tests as of yet. My kids are 6 and 3. They haven't even checked their cholesterol but I am going to insist on that at their yearly checkup in September.

Kathy

 

[Joel]

Pediatric Echo

Pediatric Echo

This is an interesting discussion. My great grandmother died from a bad aortic Valve in her 40s. Her father also in his 40s from a heart related problem (The state of Heart diagnostics wasn't so good back then to identify the specifics.)
My parents were fine, but I'm the first in my family to get a heart valve corrected (courtesy of St. Jude.)

When my wife was pregnant, I mentioned the family history to the OB/GYN, and he was skeptical about heart defects being passed down, he said especially from Father to child, he's heard of the possibility of mother to child. I don't know where he got his info, but despite his opinion/skepticism - he ordered a fetal-echo-cardiogram. Which came back clear.

I assumed the pediatrician has been listening for a murmur, but I was be explicit about that in the next visit.

I wonder how good fetal-echoes are for detecting valve problems. According to the pediatrician, they are used to make sure the heart has 4 chambers, but not much more. Which makes me wonder if an echo would be appropriate now. (My daughter is 18 months.)

I'm not paranoid, she's a happy healthy child, but her growth is very low (2nd percentile in weight, 5th percentile in size) But that is also in line with her family history. (Small babies.)

Anyone familiar with fetal-echoes?

Joel

 

[Joel]

American Heart Association

American Heart Association

I found some of the answers to my own questions at the American Heart Association Web Site,

AHA Fetal Echocardiogram

According to the AHA - "Some heart abnormalities are not detectable prenatally even with a detailed expert examination. These tend to be minor defects, such as small holes in the heart, or mild valve abnormalities. In addition, some cardiac defects do not become evident until after birth."

 

[Marguerite53]

good thread

good thread

Thanks for starting this, Christine. I just paid cash to have my 18 year old daughter "screened" with a full echo as she is off to college to play sports. I paid cash on the way in (and got a 20% discount ) and it will not go through insurance at all. I'm leery of insurance restrictions down the road for my older kids. She is fine. My cardio graciously read the results for me, gratis.

My two older kids, boys, have not been screened. They have no symptoms (my daughter did exhibit afew). I have insisted that my history be put into their medical charts. The kids (well, 18, 20, 23) have been instructed that anytime they are in range of someone with knowledge and a stethoscope to have their heart listened to for a murmur. If a murmur is detected, they should insist on an echo. There are some heart patients for whom a murmur was never detected and yet they had serious heart/valve problems. My murmur wasn't detected until my mid twenties, and yet we think I was born bicuspid. By my 20's, though, I had personal health insurance. I don't want to go looking for trouble and causing more. They need to have time to get their lives in swing without an overprotective mother getting too worried about them. They know what symptoms to watch out for. They know about me. They will have regular check-ups. For me that's enough (although my oldest just started grad school at a university with attached medical unit. I've suggested that he look into offering himself as a subject for an echo with med students in training!!! don't know if that's actually possible or not!)

Jane. Could you elaborate on what your doctor found/knows about genes and genetic predisposition to these heart defects? Any links or info from you would GREATLY educate this community.

Thanks, ladies!!

Marguerite

 

[mntbiker]

Joel,
We had the fetal echo done for both of my sons. When we told the Dr about my BAV he insisted on having the test done. He told us it wouldn't rule out valve problems since the heart was too small but he believed since a BAV is a genetic defect it increased the chances of other heart defects and he wanted to rule out as much as possible. He told us repeatedly afterwards that they should both still be checked for murmurs and if one was ever heard we should have echo's done.

 

[Natanni]

Echos w/kids

Echos w/kids

My husband is recovering from endocarditis and looking at AV replacement around the 2nd week of Sept. While being treated for his endocarditis, I asked the team of doctors about having our kids (13 and 9 yrs) screened. They said absolutely, with echocardiograms. Husband had a known murmur all his life and found recently to have bicuspid valve, and his dad had a heart transplant. We don't know any other heart history as his dad was adopted, but I am concerned enough after seeing my husband go through endocarditis. With all the echos my husband has had, it was always thought he had a leaky tricuspid valve, not bicuspid. I believe it was with a combo of TEE and the 3 dimensional echo that they found it to be bicuspid.

 

[Marguerite53]

things seem to be changing....

things seem to be changing....

My husband is recovering from endocarditis and looking at AV replacement around the 2nd week of Sept. While being treated for his endocarditis, I asked the team of doctors about having our kids (13 and 9 yrs) screened. They said absolutely, with echocardiograms. Husband had a known murmur all his life and found recently to have bicuspid valve, and his dad had a heart transplant. We don't know any other heart history as his dad was adopted, but I am concerned enough after seeing my husband go through endocarditis. With all the echos my husband has had, it was always thought he had a leaky tricuspid valve, not bicuspid. I believe it was with a combo of TEE and the 3 dimensional echo that they found it to be bicuspid.

This is very interesting about inherited defects. It seems that the more newly diagnosed you are, the more likely the cardiologist is to recommending echoes for offspring. I would really love to have some kind of data, link, or reason as to why some cardios are agreeable to screenings, and others aren't. And, is this translating into ANYONE having insurance coverage for such screenings? Or, as usual, must there be some inkling of a murmur or other symptom to warrant physician requesting an echo so that the insurance will consider paying for it?

Thanks to any who can respond.

I hope your husband is recovering well. Please keep us posted on his condition and ask this community any questions.

Marguerite