Our 7 year old son has a BAV and progressing dilation. He is 49" 50lbs. and extremely active and athletic. He went from 3.0 last year to 4.2 this year. His doctor has started him on a blood pressure medication to try to slow the dilation. the doctor does not seem extemely concerned and did not put any further restrictions on his activities (no isometrics). However she recommends we come in for a 6 month follow up to see if the medication slows the dilation. she says they have extremly high succes rates of supressing the dilation when children are on these drugs. She also mentioned that he could be taken off in the future if the dilation slows. She says surgury is usually not necessary until the dilation reaches 2x the average size and that our son is not close to that yet but progessing a little too quickly for her liking.
My question is what are the long term side effects of putting children on these medications and have you seen similar succes when using these meds? As a parent I am naturally a little scared about his future from both the BAV condition and the medication. Do children who end up having surgery to repair/replace this problem still recover well and live a normal life? Any opinion would be welcome.
One of the known complications of bicuspid aortic valve is aortic dilation, either at the aortic root or in the ascending aorta. We typically perform surgical intervention when the aorta is at least 5 cm in diameter, or is growing by at least 5 mm/year. In the meantime, we don't know exactly why this happens. There is only anecdotal literature to suggest that beta blockers or, more recently, angiotensin receptor blockers (and, potentially, angiotensin converting enzyme inhibitors) may slow or stop the progression of dilation. However, this has not been clearly demonstrated. These medications, by and large, are well tolerated as long as the kids maintain adequate hydration (especially in the summer). I will say that aortic valve disease is a lifelong problem, in one way, shape, or form. You do the best you can to minimize the risk and the progression, but it will need to be dealt with throughout his life. A number of cardiologists typically recommend against competitive isometric activities, including high school level football, weightlifting, and wrestling (any activities in which there is significant straining with force). That said, these kids can otherwise do relatively well and can still remain active without other problems.
Finally, there is a risk of this occurring in first-degree relatives (i.e. parents, siblings), so it would be a good idea to have an echocardiogram and cardiac evaluation otherwise done in that group of folks (including you, if it hasn't been done).
My son will be 4 in June and has BAV and AS as well as an abnormal mitral valve. He just had OHS last Nov to repair his AV.It was successful but his pressures are only down to 21. He does see the cardi every 6 months to see the progression of the AS.He does have other medical issues too which complicate things,but he will eventually have his AV replaced when he is older.We are hoping for when he is a teenager but we will only know in June when we go for his 6 month visit.
I am not sure about the medication.Broc was on captopril when he was younger for BP issues but does not take anything for his heart now.He is on reflux meds and asthma meds.
He is not allowed to do any isometrics or train for anything when he is older. Cardi said only fishing,golfing,things like that. If you have any questions please feel free to ask.
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