UPDATE: KIDS ECHOS-Bicuspid Parents

[Natanni]

We had Nathan's 1st post op visit with his cardio at the Mayo on Tuesday. We discussed our kids at length, and he wants our 9 year old daughter echoed at Nathan's 6 month post check, and he is going to check the results himself, and check her out Our 14 year old son with no murmer, needs no echo at this point, only if he ever develops a murmur. Kimber can continue her figure skating at this point, and if a bicuspid is found, we will discuss activity level later. ? Do they contraindicate activities in kids with bicupsid valves? I thought exercise was a good thing (didn't get that far with the cardio....) She is going to be one mad little squirt if she has to quit skating....

Just wanted to pass on this last little tid bit

 

[Marguerite53]

Natre and Annie. Awww. Sweet photo! I bet she works very hard at it, too! I would think that it's the nature of the beast is what will dictate a physician's instructions. If it is just a bicuspid valve, with little else, I don't think that she will be limited as long as the functions run well. If your daughter were to go into gymnastics, say, there might be some concern because the training level and pressures are so strenuous.

My daughter is the athlete of the family. (I had an echo done this summer -- she has no defects). She is in Division 3 sports in college now. There is very little pressure on her, though the competition is very real. (they made it to their 8th consecutive appearance at the NCAA playoffs). In HS her volleyball team won the State Championship. She was on a Club team (off season, parents pay, lots of travel, highly competitive) which took 3rd place at Nationals. The club director (also her HS coach) had coached D1 college volleyball for 10 years and was a very serious man. They trained hard. She did this for 8 years, each year their club team ranked in the top 8. Many of her cohorts went on to play Division 1 athletics (the kind with the full scholarships). Our daughter had an impressive stack of offers, but she was not interested in being "owned" by her coach. She loves playing in college and it is demanding, but nowhere near what her friends are going through at D1 schools. We never got into it for the scholarship, we did it because of who she was. She needed the discipline of sports to corral the energy in her body because she is so strong and agile. Her body is what speaks for her. I sense that your daughter may be the same way. That is why I am rambling on here

If you consider your daughter's future in light of the intensity of how some sports are coached and managed these days, your knowledge of her condition and your doctor's advice are tantamount to her personal success. You have plenty of time to find the right sport for her should she turn out to have a defect in her heart system somewhere and the cardio advises restraint for some reason. There will be a place for her to shine. I am very glad that you are having her tested. I think that is an excellent move.

Let us know!

Marguerite

 

[Curtsmum]

What a little sweetie, i hope everything goes well and Kimber can carry on skating. We was told by doctors our son Curtis could do as much exersise as he liked, then they stoped him from doing TaeKwonDo because they say some of the excersises put to much pressure on the heart. Just wanted to wish you all the best of luck Paula x

 

[francie12]

Hi, Nate and Annie--What a great picture! Kimber looks like the perfect little skater. Our 13 yr. old son is also very active and athletic AND has a moderately leaky BAV...also a moderately dilated ascending aorta. This was detected a year and a half ago after the family doctor heard a loud murmer and sent us for an echo. We've gotten the opinions of two peds cardiologists and one peds geneticist and they all say the same thing: No limitations on physical exercise with the important exception of weight lifting and any isometric exercise, like pushups, etc. I questioned them carefully about going out for track, soccer, etc. The second cardio (the one we liked and intend to stay with) went into an adjoining room, stayed for awhile and came back with copies of several research studies in his hand showing the relative safety of exercise at this level of regurgitation and dilation. Of course, we look for signs of SOB, light-headedness, etc. So far, so good. It's possible that he has a little less stamina than his peers in soccer and basketball. His daily 20 mg of Lisinopril could have something to do with that (?) Anyway, hope this helps. Our next echo is in mid-March. Wish us luck! All the best.
Jane, Matt and family

 

[Natanni]

Thanks guys....

Thanks guys....

Thank so much for your input everyone! All very encouraging. She has been skating for 4 years, and may start synchronized next year, which has a far greater level of difficulty (if she makes it...) but it is mainly aerobic. When her Dad was going through all his pre-op stuff she was with us for all the history taking that was being done. Nathan was asked about how he did as a child, as far as running. Nathan said he could run fast always, but never for any length. Kim then told me that she has a hard time with endurance in running, and that is why she loves skating....she can get fast speed with stroking, and can go on forever.

Nathan's Aunt has mitrial valve prolapse, and was told to avoid any aerobic activity and it just seems so off base to me, but then I know nothing of the mitrial valve.

Thank you Marguarite, Paula and Francie for your feedback!!!

Francie-Wishing you all the luck for that March Echo!! Please keep us updated

 

[BDMc]

Mitral Valve Prolapse + Exercise

Mitral Valve Prolapse + Exercise

I had my aortic valve replaced, and after the surgery my Doc tells me I have Mitral prolapse. I said "Why didn't you fix that while you were in there?" Never got a satisfying answer. None of my doctors have ever told me to stay away from exercise though...? Brian

 

[Marguerite53]

Nate and Annie. I LOVE the fact that Kimberly is so in tune with her own physical nature!! That she recognized the way she appreciates skating for the way she can attain speed. Aren't kids just amazing? They are so aware!! What happens along the way??? Do we get too long a list of instructions as we age??? Oh! to keep those wonderful childhood understandings alive!

Marguerite

 

[aussigal]

Great news...
she is a champion little skater just look at your lil princess , what a sweetie...

My boys have no restrictions put on them by their cardio either...
I do try to enforce the NO HEAVY LIFTING etc...with them but it doesnt get through...

luckily for me , they have all recently found out they are really good at Archery which is an "approved" sport
...and the obligatory computers and Nintendo games are pretty gentle on their hearts too...


I do pay extra attention to the 2 BAVD boys when they get headaches etc. but other than that they all seem to be doing very well with little change to their lives...They have yet to put any of the boys on meds for their BP though I would like to see that changed as a preventative measure . Matt (15) gets migraines and I took his BP and its high for him 123/65 (its sposed to be round 95/60) so I guess this is prolly the beginings of his life on BP meds.

anyway...I strayed kinda didnt I ...ooops...

This is fabbo news for you guys...

wish young Kimber all the best in her skating ...she has great style there...looks like a pro to me .

 

[tobagotwo]

People with bicuspid valves are frequently quite athletic. They also tend not to develop coronary artery disease.

I am not aware of any AHA or ACC guidelines restricting activites of bicuspid valve children at all, unless there is significant regurgitation or stenosis already present. Normally, that doesn't come this early.

However, if she's bicuspid, there will be a recommendation for antibiotic premedication for dental and other intrusive medical work.

I disagree with not giving your son the echo test. Many bicuspid valvers have no symptoms at all - including a murmur - for many years. If he were bicuspid, you would want him to have antibiotics before dental cleanings and other intrusive medical work as well. If you're going to do one, you should consider doing both. An echo is not painful or intrusive, and a murmur is not always an accurate "tell."

Best wishes,

 

[Marguerite53]

I agree with Bob. I think that knowing and thereby being able to prevent endocarditis is a very valuable thing. That being said, I have not tested my sons but am strongly considering having them take antibiotics each time they go to the dentist. The antibiotic dosage has changed over the years. We used to have to start them the day before and then go on taking them for the next 12 hours. NOW all you have to do is take one large-ish dose an hour before your procedure. That floods the system with enough protection for any errant bacteria and prevents the endocarditis. I'm sure that any doctor would be willing to prescribe such a dosage for siblings and offspring -- mine are willing. Our dentist actually does the prescribing.

Marguerite

 

[Natanni]

Thanks!

Thanks!

Well, it is settled. I will bring the boy with too. We will be doing their echos in June when school is out, and that will be Nathan's follow up as well.

I am thrilled to hear that all the youngesters get to do all their activities. Nathan had endocarditis in July, and talk about scary! Kimberlyn is premedicated now for procedures. Also beware guys of dog bites (as well as any deep venous procedures)--we heard while Nathan was in w/endocarditis of a guys valve that fell apart afterward due to dog bite.

 

[aussigal]

Ohh good...

yeah...

I was going to suggest you do that too but didnt want to nag...

My eldest boy is the only one with an audible murmur at the moment yet 2 of them have the BAVD...Steve has the BAV and a kid-size aneurysm to match and he does not have a murmur unless you listen on the echo machine... he is also a very well fed kid if you get my drift... and this can mask quiet murmurs...it takes a trained ear to hear some of these murmurs...and interestingly different positions of murmur can signify different problems.

My murmur is best heard at the bottom left of my heart kinda under my **** ...LOL...I have a very noisy heartbeat.


sothis is great do keep us up to date on their progress and more piccies of the ice-princess and her brother would be welcomed anytime..

hugs
ton

 

[Natanni]

Interesting...

Interesting...

My husband's murmur, heard from birth, was best hear while seated, leaning over his knees. When he was in the hospital with the endocarditis, nursing staff came from all over the hospital to listen to "The Interesting Patient" He always said that this is one place he didn't want to be interesting... It was always commented that he had a "drum at the 2nd beat" I am nurse and couldn't make alot of sense of it, but I thought it was my poor hearing.

Had my daughter in for all the well-being child check-ups. Always mentioned that their granpdpa had a heart transplant/cardiomyopathy/(?)viral and that her Dad had murmur and regurg...no one heard a thing until I brought her in to check for a murmur. Go figure.

 

[aussigal]

LOL...my heart murmur went away for 15 years due to my old docs poor hearing too....

I often wonder now what if we had thought to do an echo way back then??????

These weird intersting sounding heartbeats we have...I had only heard weird ones til Ben was echoed our middle boy who doesnt have the bicuspid valve...lol...it was also quite telling cos I knew immediately as we watched the other 2 echoes being done that these 2 had the same as me even before we saw the valve, it is quite an obvious "swishy schwww swoosh swoosh" when you hear it on the echo .... Kathy (the tech and I both agreed and we were right!)...normal valves are so much quieter and their beat is the normal "ba bomp" also the EKG looked different...more wiggly lines on ours...

 

[afraidofsurgery]

BAV and exercise limitations - my experience

BAV and exercise limitations - my experience

If it's any help, I NEVER had ANY exercise limitations for my BAV w/ regurgitation. As I understand it, regurgitation does not typically carry a risk of complications from exercise. However, stenosis does. In my case, I was 100% regurg with no stenosis. Had I had stenosis it may have been a different story.

I was VERY active in sports throughout childhood, adolescence, and adulthood - gymnastics and weightlifting, actually did a 1/2 triathlon once. Funny, though - I never had the endurance for distance running (duh).

So, while I may have experienced some limitations in endurance compared to other athletes, I never experienced any medical problems from the combination of BAV and exercise - and I pushed my limits! Also went through a pregnancy OK (under supervision of my cardio of course). I actually had an echo done in utero for my daughter - no defects for her.

When I did finally develop exercise intolerance this year, it was time to replace the leaker. Now I'm back to exercise and loving it!!! BTW, AWESOME photo!!! She's beautiful and talented!

Hope this helps!
Patty

 

[PapaHappyStar]

Here is what the ACC has to say on exercise restrictions for congenital bicuspid aortic valvers:

BICUSPID AORTIC VALVES WITH AORTIC ROOT DILATATION
There is growing awareness that many patients with bicuspid aortic valves have disorders of vascular connective tissue, involving loss of elastic tissue, that may result in aortic root dilatation even in the absence of hemodynamically significant AS or AR (17,18). These patients have a risk of aortic dissection; surgery to repair the aorta has been recommended for those patients with greatly enlarged aortic roots (5,18).

Recommendations for athletic participation in patients with bicuspid valve disease and associated aortic root dilatation are based on limited data, but with the understanding that aortic dissection can occur in some patients with aortic root diameters less than 50 mm. The recommendations that follow are for patients with bicuspid valves and associated aortic root enlargement. If such patients also have significant AS or AR, these recommendations should be considered in concert with those discussed in the present Task Force for patients with AS or AR. The following recommendations do not pertain to patients with Marfan syndrome, which are discussed in Task Force 4.

Recommendations:
1. Patients with bicuspid aortic valves with no aortic root dilatation (less than 40 mm or the equivalent according to body surface area in children and adolescents) and no significant AS or AR may participate in all competitive sports.

2. Patients with bicuspid aortic valves and dilated aortic roots between 40 and 45 mm may participate in low and moderate static or low and moderate dynamic competitive sports (classes IA, IB, IIA, and IIB), but should avoid any sports in these categories that involve the potential for bodily collision or trauma.

3. Patients with bicuspid aortic valves and dilated aortic roots greater than 45 mm can participate in only low-intensity competitive sports (class IA).

Bill Cobit found a link for the recommendations for athletes with heart disease from the 36th Bethesda Conference:
http://www.acc.org/clinical/bethesda/beth36/index.pdf

We discussed these recommendations at some length in these threads:
http://valvereplacement.com/forums/showthread.php?t=11738
http://valvereplacement.com/forums/showthread.php?t=11635
http://valvereplacement.com/forums/showthread.php?t=11633

What I understand from these recommendations is:
If my son has/had a bicuspid aortic valve I would be very insistent they be very careful in measuring the size of his ascending aorta for dilation. If there is no dilation ( self-limited ) competetive sports should be ok for him as they were for me ( I have no asc. aortic dilation but had a couple of incidents of passing out playing competitive sports -- once when I got hit by a fast ball in the chin playing cricket -- lots of blood... , and once when I scored a goal in a field hockey match and then passed out for around 5 minutes or so, as a consequence I dont remember scoring the goal, but was told it was quite a good one -- I was also more prone than other kids to dizziness in hot weather I think, although it was not enough to keep me from playing competetive sports ).

Bob ( Tobagotwo ) has often said in his posts that he thinks bicuspid valvers are more athletically inclined and have cleaner arteries than the rest of the population -- I guess this comes from his observations on this board? I havent read anything that would make this a physical trait, maybe many of us compensate for having a (percieved) disability by leading healthier more active lives ( I never knew about my bicuspid valve until it was ready for replacement though.. ).

Burair

 

[Wise]

I'm one of those bicuspid valvers who fights high cholesterol and high triglycerides with medication. I also do not have an athletic bone in my body...no talent or ability. But, I love reading the stories of fellow BAVs and their athletic accomplishments.

 

[aussigal]

I LOOK very athletic yet do not have any stamina and remember bailing out of sport as most normal 14 year old gal do .

However I have had no stamina for a very very very long time and have done no exercise other than walking and bringing up the kids for the last 15 years..

I have also heard and read more than once of BAVers having clean arteries...I am one of those with clean arteries PHEW least I got something right/good !..MY mum has dreadful high cholesterol yet mine has always been at teenage levels and I eat what I want in regard to fats etc. I take the lipitor as a preventative to keep my arteries clean

 

[francie12]

Thanks again to Burair for another great (and relevant to us) contribution! It seems that our BAV teen, Matt, might be on the line between these recommendations for sports activity, but it's harder to apply the guidelines to him because of his smaller body surface area. We're heading into basketball season, and I'm trying not to be over-anxious, but I keep seeing those potential "body collisions!" As other parents I'm sure understand, as much as possible I don't want Matt to think of himself as fragile, but he has to be safe and to understand his situation. Ahhhh...it's a challenge. Didn't mean to take this thread in too personal a direction. You guys are such an immense help! Our cardio. also says that BAV's tend to be athletic. Maybe because they tend to be more flexible? Interesting.

 

[Natanni]

Ohh..

Ohh..

Wow....now I wish I would have had my son checked at the beginning of the year....here we are smack in the middle of full check hockey season LOVELY!