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Post by kellyds on Jan 24, 2006 1:34:58 GMT -5
Our Joshua had a VSD repaired when he was 3 1/2 months old. He'll be one year old next month, and he has what is "supposed" to be his "last" checkup with the cardiologist on February 14, and then we're supposed to be all done. Check out this article that says childhood heart repairs wear out! I guess it's good to know what to look for. We were given the impression that this was a lifelong fix. apnews.excite.com/article/20060124/D8FAQK080.html
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Post by ashleysmom on Jan 24, 2006 4:15:36 GMT -5
WOW who would have known?
Thanks for the information. This is very disturbing and SCARY!
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Post by ALLISA on Jan 24, 2006 8:07:20 GMT -5
This is a great reminder of why it is so importatnt to continue with annual checkups....sometimes I feel like they are a waste of time.....I don't feel that way anymore !! Thanks for passing this along !! Allisa
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Post by Haleysmom on Jan 24, 2006 8:34:55 GMT -5
I wish they had touched on specifics. They only mentioned tetralogy of Fallot. We'll have to keep our eyes open for the registry mentioned.
A registry could help uncover which of 35 different cardiac defects are most likely to cause late-in-life problems, determining who needs specialty care and who will do fine with a general physician's checkups.
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Post by ALLISA on Jan 24, 2006 10:22:01 GMT -5
Yikes...I missed where the article mentioned TOF ....that is what Erin had ! Thanks for posting that....makes me even more aware!!
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Post by Evans Dad on Jan 24, 2006 11:35:05 GMT -5
Evan had his AVSD repair done when he was 3 months old. He is now 3, up until this year we had to see the cardiologist twice a year. If he has a good check up in March we will only go once a year. Evan's heart repair was major (they all are), his surgery lasted about 8hrs, so I don't know if it depends on the risk or not, but each checkup the only thing they look at are his SATS and the repair. His current cardiologist said he will follow Evan probably until he is in his early teens - I guess just like any other kind of repair, it is never as good as it would have been if the repair wasn't needed.
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Post by wrblack on Jan 24, 2006 11:56:33 GMT -5
Charlie has not had heart surgery, did not have any of the defects frequently found in our kids. Pediatric cardiologist gave him a clean bill of health at 4 months and again about age 1 year. But I still have in mind that he may need to be checked again in his mid to late teens, particularly check for leaky valves. Here's a snip, with a few asterisks thrown in, from the Health Care Guidelines, www.denison.edu/collaborations/dsq/health99.htmlCardiac: Congenital heart disease is reported to occur in 30 - 60% of children with DS. Ventricular septal defects and complete atrioventricular septal defects are among the most common. A serious cardiac defect may be present in the absence of a murmur because of the increased tendency of children with DS to develop early increases in pulmonary vascular resistance which reduces the left to right intracardiac shunt, minimizes the heart murmur, and prevents symptoms of heart failure and respiratory problems. Children with DS with a significant cardiac defect who seem to be doing clinically well or getting better, especially during the first 8 months of life, may be developing serious pulmonary vascular changes. Timely surgery, frequently during the first 6 months of life, may be necessary to prevent serious complications. Therefore, all infants and children need to have an evaluation by a pediatric cardiologist, preferably before three months of age, which should include an echocardiogram. In some tertiary care centers, an echocardiogram alone is satisfactory when it will be evaluated by a pediatric cardiologist. If this is not available, a full evaluation by a pediatric cardiologist is mandatory. ** For the older child, who has never had a cardiac evaluation and who has no signs of cardiac disease, a screening echo-cardiogram is recommended. Adolescents and young adults with no known intracardiac disease can develop valve dysfunction and should be evaluated by clinical examination at age 18, especially prior to dental or surgical procedures. [See References, Section G, Geggel RL, et al.] There is a 57% incidence of mitral valve prolapse and approximately a 10% risk of aortic regurgitation. The finding of a click or murmur should be followed by an echocardiogram. ** Susceptible individuals will need SBE prophylaxis.
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Post by willsdad on Jan 24, 2006 12:18:10 GMT -5
Will had AVSD repair, when he was 4 months old. I asked his cardiologist about the long term prognosis for kids who have this type of repair, which as Evan's Dad mentioned is considered a major structural heart repair. His reply was that there are many people now in their teens/twenties who are doing quite well, but as far as long term there are not a lot of folks who are yet in their 30's, 40's, etc. who have had these types of repairs for anyone to know how it will hold up. Will still has a severe leak of his mitral valve, so they are keeping a very close watch on his heart with checkups about every 3 months. He will likely need additional surgery to try to repair his valve, or more likely receive an artificial valve at some point in the future. I think it would be wise to err on the side of caution and get a cardiac checkup at least annually for our kids (and also adults as they grow up) who have had any type of heart repair surgery. I'm not fearful of what the future will hold, because I believe medical science will also continue to advance just as our kids will advance in age. If the time comes that these heart repairs begin to show problems with age, then I believe there will be medical procedures available to help.
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Post by Valerie on Jan 24, 2006 19:52:47 GMT -5
Nicholas had heart surgery. He still sees the cardiologist annually, and I suppose always will. I have wondered myself if there would be problems a adults, since these surgeries havn't been performed long enough to know the long term effects. I just figured we'd keep having him checked, even when he's an adult!
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