What questions to ask cardiologist about son's echo?

[TXGal]

Due to my ASD repair & MVR I made sure after my son was born that we had an echo performed asap. I was told that it "looked like" he had a bicuspid aortic valve, but they couldn't get the best look and to re-schedule an echo after 1 year, but that his heart was functioning fine.

So, last week he had his follow-up echo at 14 months and yesterday we received the news that he does have a bicuspid aortic valve. We heard from the nurse and won't be able to talk to the doctor about his echo until March 4th.

My question is, what questions do you suggest that I ask the pedi. cardiologist about his condition? I know I want to ask him if he has any type of aortic stenosis.. Is there anything else that anyone can think of that I ask specifically about his heart and the echo he had done?

 

[ALCapshaw2]

The first thing I would recommend is to get a copy of the Echo Report. It should highlight any 'out of range' numbers (at least for adults....which might not be of much use for your child).

Either way, there may be some comments or numbers that catch your eye that you can ask the cardiologist about. Keep those reports for comparison in the future, looking for any changes which are caused by something other than normal growth.

Note that MANY people live for several decades before their BAV requires attention.

'AL Capshaw'

 

[gijanet]

I second Al's suggestion.

I second Al's suggestion.

Do get a copy of the echo report as a source of comparison later down the road. You never know when you might move or your child's file might get lost. In fact, I would request a copy of all cardiologist visits and start a folder or notebook now. We are on our third notebook......................sigh!

As for other questions, just how frequently he should be followed, and whether or not your son is at risk of BE (bacterial endocarditis) (ie, should he take prophylactic antibiotics before dental procedures - although dental visits are probably quite some way off, I would suspect, as he probably only has a tooth or two by now..................he may defer that for a future visit). BTW, welcome to the group. Hugs from a fellow Texan. J.

 

[netmiff]

Not sure about what questions to ask at this point, but I am sure you will have some over the years!

I had a BAV, it was not diagnosed until my surgeon saw it during OHS, and I was 52 years old at the time. I had known I had a "murmur" for about 25years, and took antibiotics before dental appointments etc., and for the last 8 or so (after worsening suddenly) I was followed by a cardiologist with yearly echos and appointments.

 

[TXGal]

Thanks for the advice! I'm definitely taking note of all of your suggestions. I'm hoping that he doesn't have any effects until way later in life like most with BAV, but I know there is a small percentage that have problems early and I'm praying that he doesn't! I think knowing this early in life is good in some ways and terrible in others.. It's good because we can do routine check-ups and if he has any symptoms we can always check his heart knowing that he has this issue, but on the other hand, I feel like I'll always be worrying that he doesn't overdo things like playing football in high school, working out, running, etc.. but like I said, at least we know and can monitor it from here on out.. thanks again everyone!

 

[ctyguy]

I had my BAV repaired at 42 (43 now). I played football in high school, broke bones, served in the military and it never was an issue. Of course that isn't necessarily the case for all but if I were a betting man, which I am , I would say your son is more than likely safe for the next few decades. Running was always kinda tough on me when I was in the service but I never had any significant symptoms (lightheaded, dizzy, etc...). In looking back I think my body did work harder to run that some of my buds and that might have been attributed to my BAV. But I still maxed out the 2 mile run in basic training in under 12 minutes. I was huffin and puffin when I finished but so was everybody else !

I will say that in some ways Im glad I didn't know I had an issue when I was younger because it may have impacted my choices or it may have pushed me to surgery at a younger age. Given the advances we have seen in the medical field if your son is good to go for a few more decades he will probably be looking at a scope surgery by the time he needs to address the issue (if ever !)

I think the best thing you can do is exactly what you stated, keep and eye on it. Your son certainly will need to be aware of it when he gets older but I wouldn't restrict him from anything unless a cardiologist tells you as such. I suspect you will be a granny long before he is looking at any type of procedure.

 

[Lynlw]

Thanks for the advice! I'm definitely taking note of all of your suggestions. I'm hoping that he doesn't have any effects until way later in life like most with BAV, but I know there is a small percentage that have problems early and I'm praying that he doesn't! I think knowing this early in life is good in some ways and terrible in others.. It's good because we can do routine check-ups and if he has any symptoms we can always check his heart knowing that he has this issue, but on the other hand, I feel like I'll always be worrying that he doesn't overdo things like playing football in high school, working out, running, etc.. but like I said, at least we know and can monitor it from here on out.. thanks again everyone!

I certainly understand your worries and concerns, but wanted to add that children with complex CHD and many surgeries in childhood are very active and it is ok'd by their pcs. Justin wasn't allowed to play football, but that was more a concern for his sternum that was cracked a couple times and pacemaker after 10, but he played competive baseball, soccer, basketball took gym (except for a short time frame before or after surgeries) so the odds are pretty good, unless there is another CHD your son can enjoy a very good, active life

 

[mattwisconsin]

I was one of the people who had a BAV and sever stenosis early on. I had two surgeries in childhood. One at 3 and one at 13. I would be lying if I said that this didn't affect me. When I was in middle school I was really upset that I wasn't allowed to play football. Yet I did do a lot of other things, some of which I probably shouldn't have. Also with the second surgery I got an artificial heart valve and had to start taking coumadin. I was really mad about this at the time. However in hindsight it was really great for me. I have a double dose of alcoholism in the family, basically anyone who drinks on either side is an alcoholic. Also by the time I was in 8th grade I was friends with people who could get alcohol. By taking the warning not to drink with coumadin seriously, I have probably avoided having problems with this the rest of my life.

So dealing with it as a child has its downfalls and definitely made decisions for me. However, at 31 now I am happy with who I am and where I am and without it I may not have ended up here.

So as everyone else here has said, the most important thing is to watch it and adjust year by year with the echos but for the most part don't worry about it too much yet.

 

[briansmom]

Welcome to the site. You have gotten good advice above so I won't reiterate. Please keep us updated on you and your son's progress.

 

[TXGal]

Thanks again for the additional responses... sounds like it's possible to have early or late effects, so we'll just monitor and pray that it's later in life.. thank you all for sharing your personal stories.

 

[TXGal]

Well, we're off to his follow-up and I wrote down all of your great suggestions to ask. So far we've only been told over the phone by the nurse that he does have a BAV, but I'm anxious to talk to the doctor about the details of his particular valve. I'll update as soon as I can. Thanks again everyone.

 

[TXGal]

Update: Everything went well today at my son's pedi cardiologist appointment. Looks like even though he has a bicuspid aortic valve that it's functioning like a normal valve, opening all the way as if there were 3 leaflets.. also, no stenosis.. just a small murmer.. I got a copy of his echo like suggested so I can start a folder for him.. so, so far so good.. thanks again for all of the suggestions.. follow-up echo will be in 18 months

 

[Lynlw]

Great News

 

[briansmom]

Thanks for the update. It sounds like he will get to be a "normal" kid.

 

[laurad37]

That is great news. I am so happy for you and your little one.

 

[ctyguy]

Kristen...glad to hear you had good news.

It sounds like your son is in the same boat I was in as an infant. Small murmur, bicuspid valve. I knew about the murmur all along but I didn't know about the bicuspid valve until I was diagnosed. Odds are your son is a good 30 to 40 years away from any type of intervention. And who knows what technology will be in place at that point. Will a valve replacement be an out-patient procedure by then ? simple keyhole surgery ? given the leaps and bounds we have seen over the last 30 years I bet if we all had a crystal ball we would all be blow away by what we will see.

Best of luck to you and your family...

 

[Curtsmum]

So glad that you got good news, guess that wont stop you worrying. All the best to you and your son. Really hope that things go well for him.