I guess my daughter has had it for a while.I really never thought anything of it and I guess the doctors never picked up on it until she complained about being out of breath, etc after physical exertion. It is not too bad, but we had a pediatric cardiologist check her out just in case. They did an echocardiogram and everything was fine with the heart, but the pectus is definitely pressing or pushing the right atrium and right ventricle out of the way. She might have some slight discomfort when she exerts herself too much, but her heart is fine and the cardiologist said she does not need surgery to correct it.Date: 2/28/2009 12:20:28 AM
Author: honey22
Thanks for starting this thread! I just realised what my 7 year old nephew has! He was born with it and no-one thought it was even a problem. I just called my MIL and she''s not sure if his Mum realises what it is. It''s not very severe, but quite distinct. She is going to have a chat with her and take my nephew to have it reviewed as noone has done anything about it since he was born. Might be a good idea to check his lung function etc, as he does suffer from breathing problems.
Its great that your former coworker's son was able to have the surgery and that it helped him breathe better.This is definitely something I never heard about until the doctor told us and my daughter is now 16 and has had physical exams done every year. Makes you wonder if some doctors really are thorough in their examinations. I guess as patients and parents or children of patients we have to note things down that we want the doctor to check out even if it seems rather insignificant at the time.Date: 2/28/2009 9:39:44 AM
Author: thing2of2
My former coworker's son had it pretty severely and it definitely affected his breathing and lung capacity. That became really obvious once he got to high school and started playing high school basketball and couldn't keep up with his teammates. He got the surgery in his sophomore year and there was an immediate improvement in his breathing function.
ETA a friend of mine from college also had it but it was less severe and he didn't need the surgery because it didn't affect his breathing.
I can relate to what you are talking about. My son is 16 and is being evaluated for Marfan's as well. He is tall, thin, has the chest wall indent (not too severe but obvious), is nearsighted, etc... He pretty much has the Marfan body type. I actually was the one who brought it up to the doc as I had heard of it and thought he should be checked out. He saw a pedi. cardiologist two years ago and he said he seems ok but to come back in two years to retest (that will be this year). The main thing they look for the is aortic dimension measurement and the mitral valve as you said. He'll have another echo again this year to measure it. He also will have yearly eye exams. I was pretty annoyed last year as his opthamologist refused to dilate his eyes for the slit lamp, saying it wasn't necessary and he could just tell that his lens was not dislocated without dilating them. I am going to ask the cardiolgoist for a recommendation to another opthamolgoist who will do the correct test. The process can be pretty stressful! One thing I know is that kids can have the marfan body type without the associated connective tissue disorder part.Date: 2/28/2009 11:58:03 AM
Author: soocool
Its great that your former coworker's son was able to have the surgery and that it helped him breathe better.This is definitely something I never heard about until the doctor told us and my daughter is now 16 and has had physical exams done every year. Makes you wonder if some doctors really are thorough in their examinations. I guess as patients and parents or children of patients we have to note things down that we want the doctor to check out even if it seems rather insignificant at the time.Date: 2/28/2009 9:39:44 AM
Author: thing2of2
My former coworker's son had it pretty severely and it definitely affected his breathing and lung capacity. That became really obvious once he got to high school and started playing high school basketball and couldn't keep up with his teammates. He got the surgery in his sophomore year and there was an immediate improvement in his breathing function.
ETA a friend of mine from college also had it but it was less severe and he didn't need the surgery because it didn't affect his breathing.
I should add that my daughter also has slight scoliosis that was caught by her 7th grade school nurse and because of her tall stature and thinness her cardiologist wanted her checked out for Marfans or MASS Phenotype. He doesn't think she has this because there is no family history of Marfans on either side and both my husband and I are very thin (great metabolisms I guess), but he wants to play it safe. What this means is that he will do another echocardiogram next year again to make sure she does not have mitral valve prolapse or aortic dissection. She also has to have a yearly slit lamp eye exam to check for retinal detachment per his recommendation. Our family doctor disagrees with the cardiologist, but I think we will do the echocardiogram and eye exams anyway to be on the safe side.