my son has a BAV too

[aussigal]

...

well there you go ...mothers know best , darn-it...wish it wasnt so.

Steve 10, has just had his first echocardiogram at the age of 10 years ( he said it tickled and the gel was cold ) and lo and behold another Bi-cuspid valver in the family...now i need to get the other 2 boys checked too...

OK..who else has kids with this anyone else been game enough to check yet?

and what do they do,,,I am guessing they're gonna monitor him forever til it starts to play-up?!
I hope this doesnt give him too many restrictions he is such a boys' boy...real ruff and tumble kind.

 

[Curtsmum]

How sad, i bet you are heartbroken.Does he have any symtoms, when will he have to go back. When do you find out about your other boys?. i wish you all the best of luck

 

[Yaps]

...

well there you go ...mothers know best , darn-it...wish it wasnt so.

Steve 10, has just had his first echocardiogram at the age of 10 years ( he said it tickled and the gel was cold ) and lo and behold another Bi-cuspid valver in the family...now i need to get the other 2 boys checked too...

OK..who else has kids with this anyone else been game enough to check yet?

and what do they do,,,I am guessing they're gonna monitor him forever til it starts to play-up?!
I hope this doesnt give him too many restrictions he is such a boys' boy...real ruff and tumble kind.

Me, , not bav though, ours is mitral, from my paternal grandmother .. my dad had a porcine valve..my son has mvp w/some regurge..monitoring...,my granddaughter ..as well, ..my daughter wpws..shes had 2 abalations, and still is on meds ..beta blockers..sometimes our genetics so betray us ...

 

[Natanni]

the kids

the kids

We are awaiting a call from the clinic to set up my 9 year old daughter's echo. A cardio from the U of Minnesota comes up to our area every couple of months but I am thinking of just bringing her to the Mayo where Nathan had his surgery done and having her see a pediatric cardio there. She has the murmur, so I am very suspicious. Our local pediatrican felt that my 14 year old son didn't need any echo, very normal heart sounds .

 

[Mary]

Our son's BAV was found after I joined the site. He has an echo every two years. If you search back a few months, there is a thread devoted to this issue.

 

[aussigal]

Oh good once again I am not alone , amongst others who unknowingly passed something awful on to their much-loved kids .

I am making appointments tomorrow for the other 2 boys to be 'echoed' , I know I wont have to jump thru any hoops this time to get my request. My GP/PCP already will have the echo results for Steve so I will know tomorrow how well he is doing, even before I get to see our cardioligist .

Steve has the Bicuspid aortic valve and has a little regurgitation of the aortic valve visable to us on the echo...she did a very thorough exam and found no other evidence of defects (well nothing she told me about anyway)...

Steve has the Marfan-chest , flat-feet ,hypermobility, tallness and various other characteristics body-wise like myself...he also tires easily and gets short of breath , and he complains of lots of headaches , & other aches and pains and has for many years which were thought to be just growing-pains and stress...( he so sounds like a Lil boy version of me now i think seriously)

I feel so bad now for not looking into this 4 years ago when they discovered my valve but the cardio didnt mention it then and I never followed it up until i started to get heart-like symptoms that were not normal,...

I am so grateful for the knowledge I have now and that I have 3 wonderful boys I may not have had if I had known of my condition.

In Australia your local doctor can refer you for an echo so I havent taken him in to see the cardioligist yet ( but I saw him walking around while we were there this morning so i am sure he already has read the scan )..

I will book in to see him with the kids by the end of the week after the other 2 boys' scans which will determine how many of them need to come see him .


Now if only my sister would get herself checked out then I could relax a little.

 

[Mary]

It's quite possible that none of your other children will have the BAV. The statistics say they won't, and that was the case in my family. Only one out of our five children have it.

There's no sense feeling guilt in passing it on, unless you feel great unhappiness with the parent you received your genetic makeup from (your dad if I remember correctly). I've never blamed my father for mine; I' only felt great sadness that he died before we knew that he had it.

None of this is the end of the world. Knowledge is power, and you've just been given ammunition in dealing with the BAV.
Hang in there!
Mary

 

[Karlynn]

Try not to suffer from Genetic Guilt. I've passed along my MVP to my son and most likely to my daughter (She's 6' and thin - right there at the top of the MVP description). Right now my son's is just slight.

My Mom had MVP (dx'd after mine) and my sister does (with not problems associated).

I'm sure you've passed along much more good genetics to your children. Sense of humor is at the top of my list - and I'm certain you passed that along.

Best wishes!

 

[savysmommy]

I agree with Mary, knowledge is ammunition! However, it would still be hard to know one of your children has it. Dont beat yourself up for not looking into it 4 years ago. Besides, what difference would it have really made?

Did your son have a murmur, or did they just decide to do the echo because of your history?

Best wishes,
Shannon

 

[msiwik]

thanks

thanks

I agree with Mary, knowledge is ammunition! However, it would still be hard to know one of your children has it. Dont beat yourself up for not looking into it 4 years ago. Besides, what difference would it have really made? /QUOTE]

Just wanted to thank everyone for the discussion about kids and BAV. We decided to have my children seen by a pediatric cardiologist and let him get to know my history and determine how often he wants to monitor them. I very much appreciate the information that we learned here.

 

[Marguerite53]

I wish there was consensus

I wish there was consensus

Again. A very interesting thread on inherited valves. I have 3 children, no murmurs. No murmur, no insurance money for us. The youngest is 18 and I paid cash for an echo ( ) since she was off to college to play sports. Seems like there have been a lot of athletes losing their lives to heart defects lately and I did not wish for my daughter to be one of them for lack of screening. No defects. My older children, boys, have yet to be screened, but as we have 3 in college, I'm just going to wait awhile $$ ). They have been instructed to tell any physician who ever looks at them to listen to their heart. Sometimes I almost think it's a matter of well trained ears!! I mean, mine wasnt' detected until my late 20's.

Had she come back with a defect I would have been very upset, for sure, but quite frankly, it's all a matter of degrees. Many of us go through life without any problem. Heck, I had 3 children, Mary, 5!!! I'm sure those pregnancies added a little stress to the situation, but diligent monitoring is key. Now you know that he has to be watched. And for that, he is safe. You will be sure he has antibiotics for the dentist. You will teach him what feelings to watch out for. You will notice if he seems out of breath when he ought not be. As others have said, knowledge is good.

I would love to test my boys. I wish there was a more defined guideline for these cardios and GP's about inherited valves. It's amazing to me that my doctor's won't request echoes for my kids. Well, Oregon....one of the last frontiers??

We will be interested to hear about his echo report. Please let us know. Good luck!!! Best wishes to your son!

Marguerite

 

[msiwik]

Sometimes I almost think it's a matter of well trained ears!! I mean, mine wasnt' detected until my late 20's. Had she come back with a defect I would have been very upset, for sure, but quite frankly, it's all a matter of degrees. Many of us go through life without any problem. Heck, I had 3 children, Mary, 5!!! I'm sure those pregnancies added a little stress to the situation, but diligent monitoring is key. Now you know that he has to be watched. And for that, he is safe. You will be sure he has antibiotics for the dentist. You will teach him what feelings to watch out for. You will notice if he seems out of breath when he ought not be. As others have said, knowledge is good. I would love to test my boys. I wish there was a more defined guideline for these cardios and GP's about inherited valves. It's amazing to me that my doctor's won't request echoes for my kids. Well, Oregon....one of the last frontiers??

We will be interested to hear about his echo report. Please let us know. Good luck!!! Best wishes to your son!

Marguerite

A terrific perspective! I won't press for echos for my kids. I am mostly concerned that a "well-trained" ears listen to their hearts and that they be monitored as they grow up. Knowledge is the key. Thanks for your insights Marguerite - you put it perfectly.

 

[Karlynn]

A terrific perspective! I won't press for echos for my kids. I am mostly concerned that a "well-trained" ears listen to their hearts and that they be monitored as they grow up. Knowledge is the key. Thanks for your insights Marguerite - you put it perfectly.

A doctor that is a good diagnostician is worth his/her weight in gold. Our good friends own a medical supply company and they sell diagnostic sets to med students, PA's and nurses. One of the things they sell is a CD with heart sounds. The students spend hours and hours listening to these and guessing what sound means what dx. Now med students must pass a "lab" test as well as a written one to get their licenses.

 

[Karen]

tough question for me

tough question for me

The matter of testing kids... I have 8 children, ages 16-32. Among those is a set of identical twin boys -- just turned 22. One of my twins was found to have a heart murmur at his kindergarten physical. At that time, we took him to Primary Children's Hospital in Salt Lake where a pediatric cardiologist listened to his heart -- no other tests -- and said it was an innocent murmur. When he had a physical a year ago, the doctor particularly listened for a murmur and didn't hear one. Have any of you had similar experiences with a murmur appearing and then "going away" and then returning? And murmurs associated with BAV CAN go unnoticed until much later in life, obviously. But I have the most concern about this particular son. However, his twin has never been known to have a murmur. Would that be something you'd expect to see in both twins, since they are identical?

When I had my heart cath a few weeks ago, my cardio asked me again if any of my children have bicuspid valves. He said it would be "remarkable" if none of them had inherited it. But as much as it would be nice to have the peace of mind that they DON'T have BAV, it really does cause havoc with insurance coverage if they DO, even if nothing needs to be done for many, many years. I have a friend who has a 12-year-old daughter with BAV and she said it's "impossible" to get life insurance on her. I was glad that I thought all my problems had been corrected when we bought a life insurance policy on me a few years ago. Even just having had the coarctation surgery and an EKG before I was married 33 years ago made it difficult and expensive to get health insurance on me -- and even then there was a rider on all cardiovascular problems for 5 years. If I had reported that I had a bicuspid valve, I'm sure I wouldn't have gotten the life insurance that I did more recently.

Since our 5 oldest are on their own as far as insurance goes, I have told them to share my BAV history with their doctors and to not hesitate to get whatever tests are recommended if they were ever told that something was suspect -- especially if a heart murmur was detected. But I hesitate to check even our 3 youngest because of the problem it can create for them before they are established with their own insurance coverage etc. I have a little granddaughter that was born 6 weeks ago. Because of a problem she had when she injested some of the amniotic fluid, two echos were done on her to check the progress of two little holes in her heart. I asked my son before the 2nd one was done to have them look at her valves. He and his wife had enough to think about without pressing more on that matter, so I don't know if they did or not. But I would hope they could go back and look at the echos again if there was ever a concern.

I wish we could have free evaluations of our children under the age of 16! But insurance concerns are a sticky reality for most of us. Of course, I wouldn't hesitate a second to do any and all tests and treatment if there seemed to be a problem. But minus ANY symptoms, we are in the wait and watch mode...

Thanks for the continuing dialog on this subject...

Karen

 

[Mary]

Karen,
You ask if any of us have experienced a child having a murmur, and then it disappearing. Yes, that's exactly what happened to our son who has a bicuspid. The murmur was present at birth; then it seemed to disappear about the age of 9 or 10.
After I was diagnosed with my bicuspid, I pressed our family physician to send our son for an echo. Sure enough, he had one. He just turned 20, but the murmur isn't audible.

 

[Natanni]

BAV and kids...

BAV and kids...

I guess my biggest reason for checking my kids for BAV, and now persuing it for my daughter, is endocarditis. After watching endocarditis wipe out my husband and the dire consequences....I want to know everything I can about preventative care for my family.

Nathan's Dad also had a heart transplant 15+years ago now, and his cardiomyopathy was very 'nonspecific' so that is also a big concern for my husband and daughter. Unlike Marfans....hubby is on the shorter side (5'7") as is my daughter. Same build, the blonde hair, everything.....

I wanted my kids both checked, but because my son has no murmur, the doc really feels he is okay. We had the ped listen to my husband (pre-AVR) and then my daughter. Even though my son appears okay, I am going to suggest no bench pressing. My husband was was into benching pretty heavy and that is one "no-no" for BAV.

Another interesting side note was the current thread of spinal issues. Husband has a congenital irregularity in his lower pelvis/spine.

 

[bvdr]

Our 5 year old grandson also had a murmur and had a follow-up echo when he was about 2, if I remember correctly, that did not reveal any problems. He no longer has it but I do get a little concerned since his heart pounds so hard at times. He is thin and has a thin chest wall so I'm sure that is a factor and may fall within normal for his build. He does have this chronic cough that has loosely been determined to be probable asthma but time will tell.

Both my sons have had some scares with skin cancer and, although it isn't "genetic" I can remember the sunburns they had when little and how they grew up in Florida and covered only the bare essentials while playing outside much of the year. Who knew it could be making them at risk for skin cancer? I didn't for sure. They are well into their thirties now and I have apologized to both of them for future potential problems.

In my own case, It wasn't discovered that I had had rheumatic fever as a child until I was about 55. I don't blame my parents that it was undiscovered nor for that fact that I had unneccesary radiation treatments when I was 14. In some ways, I'm glad I didn't know about the heart disease because until recently it wasn't an insurance issue. I still have life insurance that was purchased years ago and I know I wouldn't currently be able to get a new policy.

I'm sorry you have to make these kind of decisions but, regardless how you handle it, I know you are making the choices out of love and concern for your children.

 

[prttyprttyprncss]

Echos for kids

Echos for kids

Ya ever just smack your hand and say DUH!?!

I have two sons, 15 & 13. My oldest has the flattest feet on Earth. His arches are so low that his ankles point downward. He's not overly tall (5'7") but is quite skinny and aside from a couple of pre-teen years where he put on some chub, he always has been. After reading these posts, what worries me is the "exercise induced asthma" he was diagnosed with around 4 or 5. He rarely uses his inhaler because he complained that it didn't make a lot of difference, just made him dizzy and lightheaded. When he was younger and ran around with his shirt off you too, could see his heart just beat so fast!

Several months before my BAV was diagnosed, I was misdiagnosed with "exercise induced asthma" and given an inhaler. Since I've been on the Beta-blocker and florinef, I've never used it, even when exercising.

I've been to the BAVD site, but I don't remember seeing anything about flat footedness being a sign of BAV?! Is that an indicator of Marfans specifically? I have flat feet as well...but I am far from tall (5'4") and ooooh, to be skinny!!

If my PCP will order it, I'm sure my insurance will cover the echos. If he doesn't agree for my sake, I'll sick my exmother in law on him! She terrifies him! haha

 

[aussigal]

Steve's valve was discovered because I insisted on having him echoed ,
no-body had heard a murmur

My own murmur was discovered at birth but I think all the doctors since then have been "hard-of-hearing" ...because it wasnt heard again for 35 years when on a particularly quiet day my new lady-doctor heard it again and decided to echo me to see what was there...

I had 3 reasonably uneventful pregnancies the BP went up but not to pre-eclampsia levevls and produced 3 fairly normal sons, well except for at least 1 of their heart-valves

As for trying to second-guess whether the twin has it I would go for yes because of the identicalness involved if I remember my genetics properly they were 1 embryo that split to become 2 sons instead of 1 , so I would guess/assume they would be the same ...I not trying to be negative just "real" .

There must be some testing/research going-on somewhere about this we could contribute to.

 

[francie12]

Karen, Mary and all--We are also in exactly the same boat. The murmer was heard at birth, we were told it was harmless--it was never mentioned again by any doctor. Fast forward to age twelve, a "loud machinery murmer" was heard which led to echo and BAV diagnosis. This is my question: Did they hear the regurgitating AV at birth, or was it indeed something something else, harmless and temporary, with the AV starting to audibly regurgitate later on? No way to know, I guess.

The more I read these posts, the more I want to have my ten year old screened. He has no murmer, but if it's possible to have a murmer and have it easily missed by doctors listening closely? I wish the insurance would pay! Changing this policy would be in everyone's (including the insurance co's) interest in the long run.

Good luck everybody!